When Less is More: the Right to Remove Excessive Limbs
A man recently maimed in an accident might feel hopeless in his new position as an amputee, and is likely to be depressed over the lost limb that he had known for his entire life. The public would sympathize with such a story, and people would be keen to lend a hand to this unfortunate soul. When the circumstances are reversed, however, a completely different perception is collectively made in the population. A person who suffers from Body Integrity Identity Disorder, shortened to BIID, has an overwhelming urge to amputate a certain healthy, functional limb, one that he or she feels should not be there. This notion is branded as disgusting and those afflicted are seen as insane, but recent studies have shown a physiological connection between the unwanted limb and how the brain recognizes it. BIID patients are otherwise completely normal, and are able to lead successful lives, but are continuously plagued with the presence of a leg or an arm that feels wrong to them. Various treatments have failed to calm the urge to remove the extremity, and the only surefire cure is amputation; unfortunately, this is often at odds with what is deemed medically acceptable, and desperate people often self-amputate. Since sufferers of BIID show that they are competent to make the decision to remove affected limbs, they not only should be allowed to do so, but insurance should cover the cost so as to limit their distress and allow them to quickly rehabilitate back into functioning society.
The Disease: a History of Misconception and Pain
Although BIID has only recently made it into the medical spotlight, the views surrounding it have always been the same in its recognized history. At first, it was considered a “sexual deviation” by Dr. John Money in 1977, and he called it “apotemnophilia,” or “love of amputation.” (Henig, 1) As a doctor whose work at John Hopkins University focused in sexuality, it only makes sense that he would come to this conclusion about the disease. As time went on and more practitioners saw people with the urge to amputate, it was called “factitious disability disorder” by Dr. Richard Bruno and “amputee identity disorder” by Dr. Gregg Furth, a child psychologist who had worked with Dr. Money on the paper that introduced apotemnophilia and who, “from early childhood… had wanted to have his right leg amputated above the knee.” (Henig, 2) Not until 2004 did the name Body Integrity Identity Disorder become the accepted term, coined by Dr. Michael First of Columbia, who started studying it in 1999. He did not find the name “apotemnophilia” appropriate since “it suggests that the primary motivation is sexual,” when in fact, “the primary motivation [is] an identity issue.” (Mulvihill, 2) Even when the medical community started to understand the condition, something akin to the more accepted Gender Identity Disorder, the idea of intentionally maiming patients was too much to consider. When one doctor decided to actively help a man who approached him and explained his situation, it caused major outcry and he was barred from performing voluntary amputations.
Acting as an angel of mercy to those wrought with desperation, Dr. Robert Smith of Scotland managed to perform two surgeries on patients with BIID before he was shut down. In 1997, he decided to help a man who “desired the amputation on the grounds that his left foot wasn’t part of him—it felt alien.” (Bayne, 75) When interviewed for the documentary Whole, directed by Melody Gilbert, he explained that on the day he drove to work to perform the first amputation, he “embarked with considerable apprehension.” He wondered if he “was doing the right thing or not” and asked the patient if it was really what he wanted to have his leg removed, and once he had been assured that it was, he went along with the procedure. Afterward, the patient explained that “his life had been transformed for the better by the operation.” (Bayne, 75) When the world heard, in 2000, of what Dr. Smith had done and was set to continue to do, he was forced to defend himself by explaining his interpretation of the Hippocratic Oath. By refusing to treat patients who would otherwise hurt themselves in desperation, he would leave them in “a state of permanent mental torment.” (Henig, 4) It would be best, then, to “have proper procedures carried out under proper, carefully controlled clinical situations where [there] is a proper standard of 21st century surgery.” (Gilbert) At the present time, this is not to be. The lack of understanding for BIID patients across the board has potentially fatal consequences, but doing the one thing that has been shown to help is too taboo.
Something must be done to change this perception. When given no safe option for effective treatment, people take the situation on themselves and essentially force the amputation to take place. In central Florida, a retired architect and baker by the name of George who “became an amputee after [he] injured [his] leg on purpose so that it would be amputated…” found that he had to take a shotgun to himself order to “become whole.” He had, from a young age, intentionally and methodically harmed his leg by “drilling holes… with an electric drill” and other “bizarre stuff” that he knows should be unbelievable. (Gilbert) Acts such as this are exactly what Dr. Smith spoke of when defending his actions, because he was being a responsible physician by “preventing his patients from resorting to more life-threatening options.” (Mulvihill, 2) George admits that his disorder sounds insane, but at the same time, he describes it as “utterly, obsessively compelling.” His psychologist, Dr. Leif Davis, met him soon after he amputated his leg, and explains that George “is not what would be legally considered insane,” because he is of “right mind,” is “brilliant,” “able to make decisions based on certain evidence that he has,” and “knows the difference between right and wrong.” (Gilbert) It would be much simpler to label a disease that has patients who are severely impaired in more than one aspect of life, but with BIID, they are completely normal, with only the uncontrollable feeling that a part of their body should not be there.
Decades of Struggle: the Search for a Cause
It is difficult to pin the cause of such a disease when all of those affected are otherwise so typical. In the 1970’s when the accepted name was apotemnophilia, the medical community thought that the drive for amputation was purely sexual in nature. This misconception continued through the nineties, when Dr. Bruno renamed it “factious disability disorder” and divided patients into groups: “people who are sexually aroused by amputees (“devotees”), who use wheelchairs and crutches to make it seem as if they are amputees (“pretenders”) and those who get amputations themselves (“wannabes”).” (Henig, 1-2) However, it does not seem that these groups should be contained under the same diagnosis. People with a sexual attraction to amputees do not usually feel a drive to amputate themselves, and a person who pretends to be an amputee could simply be seeking attention, or could possibly be avoiding the use of a limb that does not feel like it should be there. The sexual aspect has been partially discredited by Dr. First, who interviewed 52 BIID sufferers in 1999 and found that only 15% cited sexual feelings as the primary reason driving their obsession; that left much too large a group of people who felt differently for the doctor, who continued to try to find the real cause (Bayne, 78).
Considerable thought led to doctors trying to lump this problem with other diseases, but in the end, it was a futile effort to explain BIID in these terms. A disease something like Body Dismorphic Disorder, in which an “individual believes, incorrectly, that part of their body is diseased or exceedingly ugly,” was considered a possibility. However, this was ruled out by Dr. First’s study, because only one person said that ugliness caused him to disown his limb (Bayne, 75). The feeling is not that the limb in question is deformed in the eyes of the afflicted, but that it simply does not feel right. Kevin, a university professor in England, one of the two amputated by Dr. Smith, explained:
Since I was young, I’d always had this feeling that I didn’t want my left leg. Not because I didn’t like it, didn’t want it, it looked wrong or anything. I just had this feeling that it was superfluous and not necessary to me. And that feeling was always there… It was fairly evident that I was never going to get rid of it. (Gilbert)
The disease exists in childhood, before a sense of self-consciousness strong enough to result in such drastic measures can develop. Reading from his journal, George recalls the memory of a 7 year old boy he met with a peg leg, when he was still a child: “I need him, yet I am terrified by him, and totally absorbed by my need to be like him…” (Gilbert) It is clear that there is something more powerful about being an amputee than just how he looks to George. His perception of himself was only of being an amputee like the boy that he knew.
The overbearing need to have something done to the body cannot so simply be written off without exploration of the core of that person, that is, what makes each man himself. The perception of self is primarily created in a person’s central nervous system, so an abnormality in the brain could cause a leg to feel like it should not be there. It was thought that the body schema, the “representation of one’s body that is used in the automatic regulation of posture and movement” could be the cause (Bayne, 76). This idea ultimately is not realistic, since those with BIID have complete use of their limbs just like anybody else. In Whole, Dan Cooper gave the perspective of a man who has not yet had an amputation, but feels that it would correct him. He is an avid outdoorsman, an American who moved to the French Alps, and enjoys hiking and bicycling. But, when he “sees [himself] as a four-limbed person… [there’s] a feeling that [his] body doesn’t entirely belong to [him].” Dan does not exhibit the “impairment in control of movement that one would expect in a person with a distorted or incomplete body schema.” (Bayne 76) In fact, when he broke his leg, he wanted to find out if it would inhibit his outdoor activities; although he could not go as far, “[he] could still do everything [he] wanted to do.” (Gilbert) Without one of his legs, Dan would still be able to live the way he liked, and he was happy about it. Breaking his leg and getting a taste of how life would be without it did anything but dissuade him from his vision of the corrected form of himself. Dan’s body schema is fine, but he is still haunted by his leg and dreams of the day he officially becomes an amputee. This clearly points to an abnormality that is hidden much deeper.
If the body schema is still intact, a problem with body image is the only viable diagnosis that explains how a limb can be perceived differently. Body image is medically defined as “consciously accessible representation of the general shape and structure of one’s body” and in the case of BIID, can mean that the “neuronal representation” of the limb “is not healthy.” (Bayne, 76) In laymen’s terms, it essentially means that although the limb is there and functioning, the brain is not totally aware of it. At the present time, there is a theory that “BIID results from a distortion or deletion in one of the map-like representations of the body in the cerebral cortex,” which then affects the “basis of one’s beliefs about oneself.” (Muller, 38) This would explain the alien feeling that sufferers have regarding a specific limb, since it means that as the brain sees the body, it ends before the flesh and bone does.
How to Help: the Medical Community at Odds
The reality of the situation was found years after the first clues had been revealed, and quite simply dictated that the brain of person with BIID does not know the existence of a limb that is there. The cause of the abnormality is unknown, but it could easily result from an injury in early childhood or a problem with early brain development. The right parietal lobe of the brain is the exact place where the problem is, and there have been documented cases of tumors in this area that affect the body image. “Body-image distortions are known to result from tumors or strokes in the parietal lobe,” and the most famous example was of a man who woke up and suddenly tried to throw his leg out of bed, claiming that it did not belong to him; he had a “tumor… corrupting [his] body map in the brain” and “bleeding had ‘erased the leg centre.’” (Muller, 38) As soon as the problem was fixed, the man’s leg returned to him as his own. It would be correct to assume that perhaps a similar problem was present in all BIID patients, but brain scans show no clear answers and since the issue has been with them for their entire lives, it must be that the problem is permanently rooted in each individual. In Dr. First’s survey, 37% said that the “limb felt different in some way” and 13% said the “limb felt like it was not their own.” (Bayne, 79) It is no small wonder that people exist with limbs that do not fit into their body image for as long as they do. When the brain does not recognize something that is obviously present, correcting the problem is the only way that the torment can end.
The medical community is split on what exactly is the correct course of action for treatment of people with BIID. On one hand, some see it as harmful to remove a healthy limb, while others like Dr. Smith see that the real harm lies in not amputating, which could turn patients to more dangerous alternatives and would lengthen their suffering. Most doctors turn to offering various kinds of therapies, but they simply cannot “restore [patients] to their true identity,” which was the primary reason why 63% of Dr. First’s interviewees had, or wanted to, amputate (Bayne, 78).
The misunderstandings surrounding BIID are what keep patients from moving on with their lives when the cure is actually very simple. If they are able to amputate, that is the end of the story, but doctors focus on trying to treat the urge rather than allowing it to come to end. For instance, Dr. David Spiegel of Stanford thinks that it must be something like anorexia, “where people think they're fat when it's obvious they're not." (Henig, 2) “…Some psychiatrists think that these patients have a monothematic delusion akin to anorexia nervosa” but the fact is, anorexia is a driven delusion, and people with BIID know that what they feel and do is not normal, so they are not delusional (Muller, 36). However, some believe that “the fact that the choices made by BIID patients are pathological” regarding how they obsess over their limbs and go about removing them by themselves “already distinguishes them from those relatively unproblematical cases with which they are compared.” (Patrone 545) However, it is not like they can be compared to other diseases with any real amount of weight because of how different this disease is. Dr. First explained that BIID is a lot like GID, where a person is “trapped” in the wrong body, but clearly GID patients cannot change sex by themselves (Mulvihill, 2). Many of the people who want amputations are already “man-to-woman-transsexuals.” (Muller, 37) This points to a similarity in the brain that must be found, but at least transgender individuals are able to receive surgery. Although at one time doctors thought that they were seriously disturbed, nowadays it is well known that no therapy can fix the need to be a different gender.
Despite the parallels between this disease and those already recognized, there is a gross difference between treatments that are accepted for these individuals that must be amended. While BIID patients use the word “…transabled in analogy of the successful term transgender,” their “desire for amputation in analogy to the desire of transsexuals for surgical sex reassignment” does not mean that they will be given the surgery (Muller, 38). Nonsurgical treatments include regular visits to psychiatrists and can get as extreme as electroshock therapy, a terrifying idea that was hoisted on Kevin in England when his doctor threatened to sanction him under the UK Mental Health Act. He explained that all of his various therapies “were totally a waste of time,” and that “some were actually pernicious and did far more damage to [him] rather than helping [him].” (Gilbert) The consensus is that psychotherapy does not work, as 18 of Dr. First’s 52 interviewees “told their psychotherapist about their desire for amputation, and none had reported a reduction in the intensity of the desire [afterward].” (Bayne 83) Dr. Spiegel believes in this therapy and explains that “it involves training the patient to try and block the thought when it comes up and to keep him from trying to act on it." (Henig, 3) No matter the amount of this, though, it has not helped to diminish the urge in patients.
Doctors try to come up with what they see as better alternatives to amputation, but the fact remains that the effort is in vain. Even Dr. First, who has seen that surgery is the only cure, “recommends starting with therapy in combination with certain medications,” but each time he quickly sees that they do no good (Mulvihill, 3). Amputation is not yet seen as an acceptable “last resort” in the eyes of Dr. Spiegel, but he admits that research should be done to see if it is (Henig, 3). Being trapped in this situation is a distressing ordeal for patients, as there is a stigma attached with voluntarily amputation and there is no way to slake their desire for limb removal. “The people who have [BIID] are really, really suffering,” explains Dr. First, “and there is virtually no answer for [them].” (Gilbert)
Where Responsibility Falls: Allowing Amputation
There should be a way to help, though, and failure of doctors and the community to recognize that amputation is the answer is the only thing holding the cure back. Dr. Smith’s patients expressed relief and freedom after he had removed their legs, and the response is the same across the board. No matter how the surgery is procured, be it in a third world country, by a caring surgeon bending the rules, or by intentional self-injury, the result is a much happier and more functioning human being. Dr. First said that “they spend so much time thinking about it, they're pre-occupied, their life is unsettled, and after they get the surgery, they appear to be perfectly normal again.” (Mulvihill, 3) “The relief from the fifty years of torment” one man suffered before his amputation was simply “indescribable.” (Gilbert) Allowing people to live more comfortable lives and free their minds of constant, pervading thoughts is the right thing to do, and making it happen as seamlessly as possible can bring them up to a functioning level much more quickly.
The only way for a BIID patient to get an amputation currently is to cause it to happen himself, but if the surgery were covered by insurance, there would be many more benefits for all involved. Self-amputating is risking death, but still, six of Dr. First’s interviewees used “dangerous means” to achieve their goals, “including a shotgun, a chainsaw, and a wood chipper.” (Bayne, 79) Each knew exactly what he was doing, and was pleased with the result, but they should not have had to be so drastic to receive what they needed. Insurance covers the cost of prescription medication for people who are mentally ill, but when it does not work, there is little that can be done. People with the problems are out of luck because they often lose their jobs as a result, and with them go insurance. However, there is evidence that shows that amputation cures the “desire” that “interfered with social functioning, occupational functioning, or leisure activities” in 44% of Dr. First’s interviewees (Bayne, 82). Once the limb is removed, people are able to return to their lives, much happier and less distracted.
BIID sufferers deserve the same kind of care as others with all-encompassing bodily obsessions that dominate their lives. At the present time, the only way to have a chance of assuring that insurance companies will cover the cost of a mental illness is to have the condition listed in the Diagnostic and Statistical Manual of Mental Disorders, a large text akin to the Bible of psychology. It “lists all mental disorders considered distinct, pathological, and worthy of reimbursement by health insurance companies.” (Henig, 4) For all intents and purposes, BIID should be included in this tome because of its nature, but with so few cases, supporting its inclusion would be difficult; as the DSM gets larger, explains Dr. First in Whole, its usefulness and integrity are diminished. To add this disorder to the list might mean taking the merit away from other legitimate illnesses.
Including BIID under the broader category of identity disorders, though, would satisfactorily cover everybody who falls victim to a central nervous system abnormality like this. Gender Identity Disorder has been recognized for years, and just like in the case of BIID, it was seen as a disgusting problem that placed blame on a sick individual. Treatments were essentially the same, but the medical community came to see that the only effective course of action was sexual reassignment surgery and hormone therapy, which shape the individual into who he or she thinks is right. Only with time were these GID treatments culturally and medically acceptable, and it led to the relief of thousands who had felt like their bodies did not match their images of themselves. In the same way, First’s interviewees explained being trapped “in the wrong body” for all their lives, and frustration, confusion, and desperation mark them just like those who seek gender reassignment surgery (Bayne, 78) Yet, the staggering difference in perceptions surrounding these diseases is shown in that GID is in the DSM while BIID is still only possibly considered for inclusion.
If the general population and doctors were more understanding, those with BIID would not be left hanging and would be helped like those with other identity disorders. Despite the clear benefits of amputation, many think that people who have yet to get it done do not know what they are doing. Why would anybody want to become physically disabled? What is done is done, and there is no going back. But the same argument could be held against those with GID, who can be seen as mutilating themselves the same as those with BIID do. People with GID often cross-dress and act as though they are in a different gender role than the one assigned at birth, and similarly, BIID patients often bind limbs and go about life seeing how it would be without the arm or leg that plagues them. Though the idea that nobody really knows how life would be different without the limb is valid, BIID patients who “succeed in procuring an amputation seem to experience a significant and lasting increase in well-being,” which proves that they have “an adequate understanding of the likely consequences” of their actions and are of sound mind when they make the decision (Bayne 83).
A problem arises when it is thought that BIID patients want to be disabled and what that says of their mental health, but it should not be written off so easily. GID patients are generally more accepted because what they want is a change, which does not necessarily disable them. BIID patients, however, generally feel that they are not disabling themselves. It is clear that becoming disabled is not the goal of these people, that instead they are more disabled when fully intact. They “don't want to be disabled — they want to be a functioning disabled person.” (Mulvihill, 2) This can be seen in Whole, with the men who acquired amputations still working, driving, and doing things normally, with prosthetics and crutches being used instead of the more inhibiting wheelchair. The disability aspect of it does not relate to BIID sufferers. Even when they are disabled in one way, the urge for the specific limb removal remains, showing that the problem is not so superficial. One of the men Dr. First interviewed had wanted to be a “double-leg amputee” for his entire life, and even after he lost his arm in an accident, it “did nothing to diminish the intensity of [his] desire to have his legs amputated.” (Henig, 3) The limbs that are not in the body image never will be; removal is the only option.
Other claims that attempt to put a stop to considering surgery are utterly false and can be countered by analogous arguments. A fear with allowing what can be seen as unnecessary amputations to proceed is that a patient will become obsessed with the surgeries and continue to plead for more. This would worry any insurance company, since money could be lost on a person who clearly has a legitimate mental issue that is not actually being helped. A major difference between BDD, when a person continuously strives for body perfection in a battle that never ends, and BIID is that voluntary amputees know exactly what they want, and that is the end of it; they are satisfied. “Individuals do not develop the desire for additional amputations,” which is “in contrast to individuals who have cosmetic surgery,” a way that BDD manifests itself (Bayne, 83). Patients are also “quite specific about how many limbs they want amputated, and where.” (Henig, 2) The body image map is so precise that people can point to the exact spot where they want their limbs to end. Another Englishman featured in Whole forced an amputation by packing his leg in dry ice; as he sits with his stump, he can point out exactly where not enough was taken off, and where he feels that they took too much. He says that he could “draw to within a millimeter precisely how much” would have been ideal, because that’s “how precisely [he knows] what should be there,” and how “precisely [he] knew before the job was done what should be there.” Overall, he is still much happier being an amputee, is more at ease in his personal life, and continues to be the kind of man he was before forcing amputation.
Allowing an individual to be exactly what he believes he should in a bodily sense lets him continue with his life, unhindered. Nobody is helped by blocking BIID patients from amputating, but there can be lives lost when desperation takes its toll. These are otherwise normal people who have only this “isolated abnormality,” in the words of Dr. First. Helping them get what they actually need—not trying to cure them in ways that clearly cannot alter the disrupted body image that causes the disease—is the only viable course of action. The DSM should be amended in order to bring aid to these people, just like it was amended to include GID in the past. This is the only way to bring an end to the torment that causes self-amputation by people who know that there is something wrong with them. Doctors also acknowledge the oddness and concede that there is no real answer, but Kevin, the man whose leg was removed by Dr. Smith, explains that “knowing it’s peculiar and saying it’s weird doesn’t do away with the problem.” (Gilbert) When amputation is the only way to calm otherwise normal people of their intense desire, it should be allowed and covered. It would be more inhumane to allow them to suffer and ignore their wishes.