Original article
Scientific American Mind, December 2007/January 2008, p60-65. Available from: Scientific American Mind website
People with body integrity identity disorder feel alienated from a part of their body and want to have it amputated. Researchers are unraveling clues to the causes of this bizarre condition
The author does not bring anything new to the table, although she gives a relatively rounded explanation of Body Integrity Identity Disorder.
She has focused solely on the amputee aspect of BIID, which is not unexpected, although it is disappointing. This creates a self-generating myth: the more authors write that BIID is only about amputation, the more people will believe it.
"[..talking about the amputations done by Dr. Smith at Falkirk] Neither procedure was medically necessary."
It depends how one defines "medically necessary". If medicine is only about the health of the physical body, then, indeed, the procedures were not necessary. However, we argue that health encompasses both physical and mental well-being, and as such, the procedure were indeed necessary for these individuals, and are necessary for many other people.
"As bizarre as such attempts may seem, recent research suggests that people with BIID are not delusional."
In fact, if an individual is delusional or psychotic, they are ipso facto not dealing with BIID.
"Although early work hinted that BIID was induced by a sexual fetish with amputation, researchers have now largely turned to other explanations."
And it was about time as well. Research, such as Dr. First's, shows that sexuality is not a primary motive for requiring an impairment.
"One theory is that BIID patients long for disability as a way to gain attention that they lacked in childhood."
That theory was suggested by Dr. Bruno, a doctor who published one article, selecting two clients that are not representative of individuals with BIID, as demonstrated in Dr. First's study. The need for attention theory is an easy one to suggest, but it is completely erroneous. The entry "Not about attention" discusses this more.
"Other research findings indicate, however, that the ailment arises from a neurological conflict between a person’s anatomy and his or her body image."
Whether the dichotomy between body image and physical body is neurological or psychological is ultimately almost irrelevant. But we would like to see proof of a neurological explanation for BIID, as it would make the condition more acceptable to the public at large - if it is neurological, it's not mental, and that means we don't have control over feeling the way we do (of course this perception forgets the fact that there is often no control over psychiatric conditions).
"No medication or psychotherapy technique has yet worked to dampen the pathological yearnings of people with BIID. Surgery, on the other hand, has apparently helped in some cases."
A fact that cannot be repeated often enough.
"Rather than resorting to such drastic measures, however, most doctors are hoping that scientific advances will lead to ways of correcting the underlying psychiatric problem, quenching the thirst for amputation before it leads to disability."
Yes, but in the meantime, transabled individuals suffer! Would those same doctors refuse a cutting edge treatment for cancer on the basis it might be too disabling, if no other treatment was available? Would they let the cancer patient suffer until a better treatment was offered, five, ten or 25 years down the road?
Plus, let's not forget that an impairment may not be disabling. Considering the medical bias against disabilities, doctors are badly placed to judge quality of life and "disability" post impairment. We assert that untreated BIID is more disabling than a physical impairment such as an amputation, blindness, deafness or paralysis.
"In 1977 the late sex researcher John Money and his colleagues at Johns Hopkins University described two individuals who wanted to become amputees because they found the idea sexually arousing."
Because Money found two individuals for whom sexual arousal was a primary factor in their need to lose a limb, the entire condition has been painted as a paraphilia. This has caused a lot of damage to many people with BIID for whom sexual arousal is not a primary factor in BIID (which is the majority of BIID sufferers).
"Bruno,[...] described a subset of BIID patients who are sexually attracted to amputees and are thrilled by the idea of being an amputee; he dubbed such people 'devotees.'"
Bruno's "research" cannot be taken seriously, primarily because of the selection of study candidate. Be that as it may, the devotee "phenomenon" is quite well known, albeit quite different from BIID. While some BIID sufferers have devotee feelings as well (according to First's research), one does not equate the other.
"First likens BIID to gender identity disorder, in which patients are similarly uncomfortable with part of their anatomy because it is at odds with their internal sense of self."
The similarities between GID and BIID are numerous and First is not the first one to have mentionned it.
"Both BIID and gender identity disorder typically originate early in life and are sometimes successfully resolved with surgery."
The author makes light of the success rate of surgery for transsexuals. Is this a desire to reduce the impact of the statement that surgery works as a treatment for BIID? Of all the individuals we have spoken to who had succeeded in becoming amputee, none of them have any regret (other than not having done it sooner), and all express feeling better now than before.
"Such similarities suggest, according to First, that BIID is an identity disorder and should be classifi ed as such in the Diagnostic and Statistical Manual of Mental Disorders (DSM), the standard handbook for mental health professionals."
Inclusion in the DSM will go a long way towards helping BIID sufferers be better handled by medical professionals. As Dr. First is an editor of the DSM, this assertion shows that it BIID has a good chance to be included. However, There have been arguments against inclusion because the number of individuals with BIID is too limited, and as such the DSM would lose its usefulness by including conditions that only affect a relatively small number of individuals.
"[Quoting Arthur Caplan, Director of the Center for Bioethics at the University of Pennsylvania] Amputation of healthy limbs is a violation of the Hippocratic Oath, which instructs doctors to do no harm. From a psychiatric perspective, the desire of a BIID patient to amputate a limb is just as delusional as the desire of an anorexic to continue losing weight. In such cases, the person must be protected by the doctor from his or her own irrational desires. In addition, the satisfaction often voiced after the procedure is not necessarily permanent— although the amputation is. Finally, significant costs to society could result if, for example, the person claims the right to medical rehabilitation and early retirement."
- The Hippocratic Oath is a poor argument to hide behind. By not assisting us, medical professional in fact condemn us to a life of suffering, which is more harmful than living with an impairment. See Hippocratic Oath for more on this.
- There is a major difference between BIID and anorexia (BDD) - People with BDD think their body is deformed, whereas people with BIID know their body is 'normal'. To say BIID is the same as BDD would be to say that GID is the same as BDD, and to refuse surgery as an option for GID on that basis.
- Where does Caplan take the "fact" that post impairment satisfaction is not permanent? All evidence shows the contrary. Is Caplan asserting facts (if so, where are his studies), or is he merely expression an opinion (if so, can this opinion really be taken into account when discussing facts?)
- What about the very real and significant costs to society incurred by having people with BIID unable to function in the workplace or in society, due to the pain, anguish and suffering caused by untreated (and untreatable without surgery) BIID?
It is worth noting that Dr. Caplan is recognised by the disability rights community in the United States as being "disability phobic". He is also involved in the debate about physician assisted suicide, firmly on the side of helping people with disabilities die. We are suspicious of anyone stating that surgery is not ethical when their public views is recognised as being significantly biased against disabilities.
"Traditional psychotherapy and medication, such as antidepressants, have so far had little effect on the desire for amputation. For instance, neither technique had much influence on BIID symptoms in the subjects in First’s study who had tried it."
Indeed, talk therapies, Cognitive-Behavioural Therapy and medications don't make a dent in BIID feelings.
"In hopes of finding a more effective treatment, researchers are investigating ways to target the neurological underpinnings of BIID."
Yet, they refuse to provide the one solution that is known to work: surgery. Why not provide surgery as an option to those who want it while they look for a less invasive solution?
"A method under investigation by Ramachandran and McGeoch might work better in such instances. Rinsing an ear canal with warm and then cold water, which stimulates the half of the brain opposite the treated ear, temporarily alleviated somatoparaphrenia in stroke patients. The technique may work by exciting the parietal lobe, and the researchers now want to test it on people with BIID. If the method helps such patients, doctors might try the more lasting tactic of implanting electrodes that zap the relevant brain region directly."
Oh, right... Sooooo, they won't cut a limb, but they'll happily open our brain and put in permanent electrodes in the brain? This strikes us as completely incongruous. I am reminded of an experiment with paraplegic, whereby wires and electrodes were implanted in their legs, to stimulate the nerves and muscles to facilitate ambulation with braces and walking frames. Yet, after several years, the wires corroded in their body and large chunks of their muscles had to be removed when they had to remove the wires out, lest the people die. I don't think so. Leave my brain alone!
"Currently the most effective treatment for BIID may be the most damaging: surgery. The six patients in First’s survey who had received an amputation at their desired location reported that the procedure abolished their yearning to cut off a limb and brought them great happiness. "Since I had it done fi ve years ago," one person said of an amputation, "I’ve felt the best I’ve ever felt." Another remarked, "It finally put me at peace. I no longer have that constant, gnawing frustration.""
These statements are pretty strong and show that surgery does work. Why continue to ignore them?
Further, we argue that "damage" is only relative and cannot be simply evaluated on the basis of physical state, but must be looked at from a wholistic point of view, including the mental well-being.