Confounding Extremities: Surgery at the Medico-ethical Limits of Self-Modification
 Original article
Journal of Law, Medicine & Ethics, Vol. 32, 2004. Available from Questia.com
Controversy swept the U.K. in January of 2000 over public disclosure of the fact that a Scottish surgeon named Robert Smith had amputated the limbs of two able-bodied individuals who reportedly suffered from a condition known as apotemnophilia. (1) The patients, both of whom had sought and consented to the surgery, claimed they had desperately desired for years to live as amputees and had been unable, despite considerable efforts, to reconcile themselves psychologically to living with the bodies with which they were born. (2) Both surgeries were successful, and both patients, who had undergone psychiatric evaluation prior to the amputations, subsequently reported having no regrets. (3) In the wake of a wave of sensationalistic stories in the media, the hospital at which the surgeries had been performed, the Falkirk and District Royal Infirmary, banned any future surgeries of the kind. (4) Outraged local politicians promptly announced their intention to pass laws banning the procedure outright. (5) One member of Scottish Parliament declared the surgery "obscene" and asserted that "the whole thing is repugnant and legislation needs to be brought in now to outlaw this." (6)
The parliamentarian's reaction is understandable not just on a visceral level, but on an intellectual one as well, since the apotemnophile's desire to be dismembered is grounded in paradoxes: wholeness is experienced as incompleteness; self is experienced as alien. (7) But the automaticity of the politician's response suggests, even as it implicitly denies, the need to examine the cultural dimensions of the paradox and to understand what is at stake for apotemnophiles and for society at large in the proscription of amputations performed on physically healthy individuals. Although apotemnophilia is by no means common, its effects can be quite devastating for those who count themselves among its victims. Consider the case of Philip Bondy, an apotemnophile who died from gangrene in 1998 in a San Diego motel room within days of a "back alley" amputation in Tijuana. (8) Bondy's case is illustrative of both the grim determination of apotemnophiles to effectuate the amputations they desire and the serious physical harm to which this determination makes them potentially vulnerable.
Whether one thinks that elective amputation should be outlawed as butchery, as suggested by the Scottish parliamentarian, or allowed (if not necessarily embraced) as a medically legitimate operative therapy for a psychiatric condition depends a great deal on how one regards the body (for example, on how one defines such terms as "bodily harm" and "bodily integrity"), and on how one delineates the limits of an individual's consent over the disposition of his or her body. Against the backdrop of these...
"...both patients, who had undergone psychiatric evaluation prior to the amputations, subsequently reported having no regrets"
"Realised wannabes" do experience a higher quality of life afterwards, yet there has been no systematic study of these individuals.
"In the wake of a wave of sensationalistic stories in the media, the hospital at which the surgeries had been performed...banned any future surgeries of the kind."
Were surgeries banned only because of the media circus? Someone must have approved the surgeries at the hospital before they took place. But suddenly the media gets hold of it and the hospital changed its mind. Was the decision to stop surgeries really one taken based on "sound medical practice", or one based on fear of the media (mis-)representation, and the resulting public backlash?
"But the automaticity of the poltiician's response suggests, even as it implicitly denies, the need to examine the cultural dimensions of the paradox"
This goes back to the medical and societal bias against disabilities.
"Inspired by the sexual dimension of the early case histories, "apotemnophilia" remains the term by which the condition is known, but cases that have come to light over the decads since the term was introduced suggest that the etiology and symptomatology of the condition are more multidimentional than Money had thought"
The author grasps the significant difference between apotemnophilia and Body Integrity Identity Disorder. More researcher should pay attention to this difference.
"Ultimately, the range of options available to apotemnophiles seeking medical treatment (psychiatric and surgical) will probably be contingent to a great extent on the emergence of a definitional consensus that has not yet been reached in the psychiatric community."
In other words, "No diagnosis = No treatment". Until, and unless, BIID becomes a recognised condition, that medical professionals can find in books, they have no basis for even beginning to formulate an acceptable approach for treatment.
"The term 'transsexual' first appeared in the professional literature in 1923. At that time, no distinction was made between transvestism and transsexualism - conditions that have since been recognized as distinct."
This is similar to the intermigling that many people seem to do with terms such as devotees, wannabes, or pretenders. Will we see, 50 or 75 years from now, a clearer demarcation between these various "conditions"?
"The DSM is thus an always-ongoing classificatory project whose categories shift, and sometimes disappear entirely, from one edition to the next."
We argue that what is needed at the moment is for BIID to be included in the DSM, even if in a subsequent edition it is re-evaluated and removed. Thousands of transabled individuals need a solution now, not in 15, or 25 years.
"In these cases, patients experiencing their limbs as radically 'other' where discovered to have had lesions or tumors in the parts of their brains controlling the awareness, or gnosis, of the limbs in question."
Could meningitis cause such lesions in the brain, and could it explain the need for paraplegia? This is something that could be an interesting research.
"Until the possibility of a neurological cause can be fully investigated, however, apotemnophiles and the pyshciatrists who treat them are faced with having to choose whether the goal of treatment should be the modification of the body (to make it comform to the apotemnophile's disabled body image) or the modification of the body image (to make it conform to the non-disabled body)."
The later suggestion would be acceptable only if there was indeed a way by which psychotherapy could be effective in changing thought patterns as they relate to BIID.
But this is also saying that because a "better cure" is right around the corner, we should wait. This is basically a refusal to treat people who suffer now, on the basis that something better might be around the corner. Would you refuse a particular, yet risky, cancer treatment to someone because of the side effects? Even experimental treatments are tried on willing patients. Yet, we are not even offered the opportunity to participate in clinical trials to establish whether surgery is indeed as effective as we believe it to be.
"It is no doubt because the physical transformation apotemnophiles desire falls so conspircuously outside the boundaries of professionally and popularly accepted varieties of surgical self-modifications that elective amputation has been the subject more of scandal than of serious contemplation."
In other words, Body Integrity Identity Disorder is too strange to be acceptable in "proper society". We argue, again, that the medical and societal bias against disabilities plays a major, if unconsious, impact in the refusal to entertain surgery as a possible form of treatment.
"At the turn of the twentieth century, many physicians believed that cosmetic surgery undermined fundamentl tenets of the medical profession by violating the ethical injunction against doing harm... After a century of social and cultural change, however, cosmetic surgical procedures that were once considered risky and gratuitous are now commonplace."
Things do change. Ethics and understanding evolve. Even SRS wasn't considered acceptable at first.
"...beliefs about the integrity of the body and the nature of bodily harm are culturally mediated and historically contingent."
Once again, this ties in to the medical bias against disabilities.
"Labelling the transformation sought by apotemnophiles "self-mutilation" rather than "self-modification" or "self-transformation" - terms that typically attach to more conventional body-altering surgeries - begs the question: it presupposes that the apotemnophile's passage into disability involves an unjustifiable assault on bodily integrity, eluding the possibility that it could be regarded more neutrally (though also much more controversially) as involving the surgically-enabled fulfillment of an alternate body Ideal. This is not to suggest that there is no meaningful distinction to be drawn between procedures like rhinoplasty and elective amputations; rather it is to observe that what counts as "self-mutilation" or conversely as "bodily integrity," is neither universally self-evident nor historically unchanging. For this reason, the transparency of such terms cannot be taken for granted if the conversation about apotemnophilia is to be truly interdischiplinary in nature - as it must be, given that apotemnophilia is a phenomenon that involves multiples discourses, including psychiatry, cosmetic and reconstructive surgery, cultural studies of the body (e.g.disability theory), bioethics, and law"
The use of language impacts the perceptions and attitudes. "Self-mutilation" immediately connotes negativism and makes the act something to be avoided and shunned. The individual who performs it is, ipso facto, in the wrong. Yet, "self-transformation" does not carry such a negative perception. Transformation is oft equated with improvement, and in our society, it is laudable to be on a quest to self-improve.
<blockquotes>"Viewed from the vantage of the social difference theorists, the apotemnophile can be understood as implicitly challenging the pervasive stigma of disabilitie not only by embracing by by seeking to literally embody an alternative conception of bodily integrity."</blockquotes>
Yes! Exactly. Transabled individuals are in fact pushing the ideals of the social model of disability to the limits. This forces a change in paradigm, where it's not "better dead than disabled", but the opposite!
"It is important to emphasize, however, that throughout mayhem's life as a legal concept, an exception has been made for medical procedures including the surgical amputation of limbs. This exception is consistent with the law's general tendency to leave judgments about necessary and appropriate medical therapies to medical professionals"
So, the law allows doctors to use their judgment!
"Smith... accepts the proposition that his patients understand bodily integrity to mean something other than having "the normal complement of four limbs"."
This is an important point to keep in mind. Medical professionals who understand this difference in thinking cannot help but to take surgery as the logical solution for transabled individuals.
"Administrators at the Falkirk Infirmary... suggested an alternative venue. The surgery, they ventured, should be performed at a university research hospital if it is to be performed at all."
This is not necessarily a bad idea. But which hospital will take it on? We would welcome a study where surgery is used as a method of treatment and long term examination of patients post-surgery.
"Agich sites the recent revisions of the Declaration of Helsinki, which now recognizes that in the treatment of a patient, where proven prophylactic, diagnostic, and therapeutic methods do not exist or have been ineffective, the physician, with informed consent from the patient, must be free to use unproven or new measures if in the physician's judgement they offer hope of saving life, re-establishing health, or alleviating suffering. This provision creates what in Agich's view is a needed exception to the stringent formal requirements associated with clinicla trials and research protocols. Under the trms of such an exception, smith's provision of elective amputations to apotemnophiles could be ethically permissible even though it has not yet been experimentally investigated of validated"
This is excellent support in favour of a medical/surgical solution for those transabled individuals who require it now. Once several of these procedures have been made, then a more formal study could be undertaken to prove (or disprove) the effectiveness of surgery as a treatment option for people with Body Integrity Identity Disorder.
"There is, according to Smith, a hgih probability that some will "treat" themselves by staging accidents or by otherwise severing their own limbs"
This is not a probability. It happens regularly. One might even suggest that many "accidents" cases in emergency rooms were not at all accidents, but attempts at self-transformation.
"The debate over apotemnophilia and its proper treatment represents an opportnity that should not be overlooked to examine assumptions within the medical and bioethics communites about the meaning of bodily integrity, the limits of patients and physician autonomy, the regulartory process of medical standard-setting, and the status of the REP as the gatekeeper to innovation in clinical practice."
While these rethorical issues are interesting at large, they are not providing a real, practical and immediate solution for BIID sufferers. It would be a shame to hijack the situation of BIID sufferers just as a topic of discussion to examine all these issues listed by the author.
The author makes several excellent points in favour of surgery as an acceptable treatment option for people who have Body Integrity Identity Disorder, however, the conclusion is "wishy-washy", and somewhat non-commital.