September 9, 2008

aBoUt BIID


“You can pay a surgeon to suck fat from your thighs, lengthen your penis, augment your breasts, redesign your labia, even (if you are a performance artist) implant silicone horns in your forehead or split your tongue like a lizard’s. Why not amputate a limb?”
-- Carl Elliot, “A New Way to Be Mad,” “Atlantic,” December 2000

Berlin Germany, New South Wales, San Rafael California, Launceston Tasmania, Montreal Quebec, Yonkers New York; over the last two days these are just some of the places that have gone to this blog looking for information on BIID (Body Integrity Identity Disorder). I’m not sure if this has to do with the dearth of information on the subject, or the silent, but sizeable number of folks who suffer this affliction.

You may recall that I originally posted an essay on this issue as a way of demonstrating the wide variety of topics students come up with when left to their own devices. I found this particular paper, at once, fascinating and disturbing, and, hence, something that might be of interest to my audience. Little did I dream this piece would lead to such an interest in my blog. This, in turn, spurred me to compose two posts. One a short essay on the questions surrounding BIID having to do with medical ethics. The second, an essay rethinking my first conclusion that framed the issue as a matter of choice rather than as a kind of personality disorder.

My thinking turned to the idea that, since BIID is a psychological condition whereby a person desires an amputation because they perceive their body as at odds with the idealized image they have of themselves, there might be, perhaps, psychological therapies that might trick them into thinking the alien limb is missing. And while this made sense according to the classis definition of BIID, it simply couldn’t account for comments on the posts, like that of Sean, informing me that there are manifestations of BIID where one might desire to be paralyzed, or blind, or deaf. If it wasn’t bizarre enough that a person might reject a perfectly healthy limb, here were people obssessed with a wish so incomprehesible to most of us as to be untenable. Sean’s revelation also stripped away the sexual component so often associated with BIID.

And what is this sexual component? It takes two forms, acrotomophilia and apotemnophilia. The acrotomophile is erotically excited by the stump(s) of the amputee partner, or dependent on the appearance or illusion of one's partner as an amputee as a way of achieving arousal and orgasm, or obssessed with an amputated extremity in itself, or the person of the amputee. In the BIIDS vernacular we call these folks “devotees.” A fictional example of this, which I have mentioned previously, would be Manly Pointer, the Bible salesman in Flannery O’Connor’s “Good Country People.”

The correspondent paraphilic condition, self amputation, is referred to as apotemnophilia. The first modern case study of apotemnophilia was published in 1977 by the Johns Hopkins psychologist, John Money. By way of definition, paraphilias are mental disorders characterized by sexual fantasies, urges, or behaviors involving non-human objects (Fetishism, Transvestic Fetishism), suffering or humiliation (Sexual Sadism, Masochism), children (Pedophilia) or other non-consenting persons (Voyeurism, Frotteurism, Exhibitionism). Outside of the medical realm, paraphilias are commonly described as perversions. For those of you unfamiliar with the term frotteurism, it refers to a specific paraphilia which involves the non-consensual rubbing against another person to achieve sexual arousal. The contact is usually with the hands or the genitals and may involve touching any part of the body, including the genital area.

As Carl Elliot’s wonderfully informative December, 2000 “Atlantic” article, “A New Way to Be Mad,” points out: “The grand old man of psychosexual pathology, Richard von Krafft-Ebing, catalogued an astonishing range of paraphilias in his Psychopathia Sexualis (1886), from necrophilia and bestiality to fetishes for aprons, handkerchiefs, and kid gloves. Some of his cases involve an attraction to what he called ‘bodily defects.’ One was a twenty-eight-year-old engineer who had been excited by the sight of women's disfigured feet since the age of seventeen. Another had pretended to be lame since early childhood, limping around on two brooms instead of crutches. The philosopher Renè Descartes, Krafft-Ebing noted, was partial to cross-eyed women.”

The apotemnophile is referred to as a “wannabe.” For some wannabes, and I qualify this because many wannabes reject the stereotype that all BIID folks be characterized as having a sexual fixation, arrousal and orgasm are contingent on being oneself an amputee. There is a third term in the BIID nomenclature, which may or may not have a sexual aspect, and that is “pretenders.” Pretenders is the label given those who have no disability, but employ wheelchairs, crutches, and braces, typically in public, as a way of feeling disabled.

Having briefly surveyed some of the sexual aspects of BIID, let’s turn to public perceptions of BIID. The standard response is one of disgust and repulsion. Yes, we might identify with the feeling that when one’s, foot, arm, or hand, falls asleep it seems unattached, or alien to us, but the idea of having that appendage removed to remedy this feeling is, for most of us, unassimilable. How can these wackos have these twisted desires when there are so many people experiencing very real, and undesired, pain and suffering? And, as Sean will testify, there were many posted comments to this effect. So it’s no accident that wannabes experience feelings of shame and unworthiness about their obsession. They feel utterly alone in refusing to believe anyone could harbor such bizarre thoughts. They may seek out psychiatric treatment without ever informing the therapist of what they consider to be their deviant underlying desire. They experience repressed feelings of intense jealousy at the sight of an amputee, and that they are alone in the world with their hidden desire to become an amputee.

The upshot of this is that, due to the stigma surrounding this disorder, an accurate assessment of just how many BIID sufferers exist is unavailable. What makes these determinations difficult is that most BIID folks are too ashamed to admit to their problem. The tragedy in all this is that since the chance of a BIID patient having a genuine accidental amputation is infinitesimally small, and because of the major moral, ethical and legal dilemmas involved for the surgeon, the sufferer must create situations in which the limb is traumatically amputated or is so damaged that amputation is necessary. Much as in the case of euthanasia, the unwillingness by Doctors to consider a request that flys in the face of everything they’ve learned about medical ethics, has resulted in a situation where BIID folks make dangerously risky, and more often than not, life threatening decisions.

Again, here’s Elliot: “Healthy people seeking amputations are nowhere near as rare as one might think. In May of 1998 a seventy-nine-year-old man from New York traveled to Mexico and paid $10,000 for a black-market leg amputation; he died of gangrene in a motel. In October of 1999 a mentally competent man in Milwaukee severed his arm with a homemade guillotine, and then threatened to sever it again if surgeons reattached it. That same month a legal investigator for the California state bar, after being refused a hospital amputation, tied off her legs with tourniquets and began to pack them in ice, hoping that gangrene would set in, necessitating an amputation. She passed out and ultimately gave up. Now she says she will probably have to lie under a train, or shoot her legs off with a shotgun.”

Robert Smith, M.D. writes: “The BIID patient with self-injury usually presents with a unusual history of injury and is reluctant to talk about the details of how the injury happened. Common techniques used involve guns, power saws, industrial equipment and railway tracks. Following recent publicity about a BIID patient who froze his leg with dry ice, a number may present with severe cold injury following the application of dry ice. Unlike the typical patient with a medical combination requiring amputation, the BIID patient will show no concern in situations where the surgeon suggest an amputation. They will be very keen to have the amputation completed or may refuse to consider reimplantation or attempts at limb salvage. Patients with cold injury will request amputation immediately. Furthermore, patients with BIID will have a very precise idea of what level of amputation they require.”

In the BBC documentary, “Complete Obsession,” Robert Smith, the now famous surgeon at Scotland’s Falkirk and District Royal Infirmary, who amputated the legs of two wannabes, contends, “that their body is incomplete with their normal complement of four limbs. In a way, most wannabes are of the curious mindset that less is more. For them, an holistic sense of physical identity is only achieved by a kind of somatic subtraction. What I’ve found in my limited research is that the issue of selfhood, rather than sexuality, informs the wannabee mentality. It is a matter of identity, how they see themselves as they were or should be, which begs the question of why they percieve themselves as amputees(see post, “BIID: Philosophical or Medical Issue?”). Again, the vast majority of interviews with wannabees are framed within the langauge of identity, rather than sexual desire, in describing what they feel and why they feel this way.

What’s become clear to me is this: like the wannabes, who are as firm in their convictions about what they want as they are unsure of why they want this, our understanding of BIID, whether it involves what Ian Hacking calls “semantic contagion” (desires prepetuated by the public dissemination of BIID descriptions), sexual deviation, or body image perceptions of identity and selfhood, we are still a long way away from a clear understanding of apotemnophilia.

Peace, my BIID brothers and sisters – Randy Tessier

1 comment:

Anonymous said...

From the weekly column of Suzy B. Anthony "KeepingYouPosted"

It was announced today that the annual BIID charity ball's guest speaker for next year will be the infamous ME. ME who is recovering from an assassination attempt lost his sight in one eye and had part of his lower arm amputated due to an infection. ME has agreed and his talk will center on encouraging people with BIID's to head up support groups for people who have lost senses or bodily parts due to circumstances beyond their control. War, car accidents, etc. ME feels people with BIID have a unique insight into how to deal with artificial affliction and could possibly help those who are dealing with handicaps that are not natural. In other developments regarding the event. The theme song for the ball will be Patsy Cline's "I Fall To Pieces" Suzy's column can be read every week on line. In related news the trial continues for ME's assassins. There has been controversy over the selection of an all male jury.

From the OD news service.