Cutting Desire

"Josh" says he was fully prepared when he amputated his left hand with a power tool. He says he had tried to cut it off before—once putting it underneath a truck and trying to crush it (the jack didn't collapse right); once attempting to saw it off with a table saw (he lost his nerve). He even spent countless miles driving around with his hand dangling out the window, hoping to get side-swiped. But this time he was determined to succeed. Josh, who insisted on anonymity because his family thinks he lost his hand in an accident, says he practiced on animal legs he got from a butcher, and he was equipped with bandages to stop the bleeding and a charged cell phone in case he got dizzy. Now, years later, Josh says he feels wonderful without his hand, that his amputation finally ended a "torment" that had plagued him since middle school. "It is a tremendous relief," he told Newsweek. "I feel like my body is right."

Surprising as it may seem, Josh is not alone. He has what some scientists are calling Body Integrity Identity Disorder (BIID), an exceedingly rare condition characterized by an overwhelming desire to amputate one or more healthy limbs or become paraplegic. The desire to be disabled seems so bizarre and contrary to basic human instincts that those who suffer from BIID have largely kept their compulsion a secret. But online communities of those with BIID have formed over the last decade, galvanizing a small movement to bring the disorder into the open.

They may soon be getting some support from the scientific community. BIID is attracting the attention of researchers who suspect that the condition may be related to other body image disorders—including anorexia, body dysmorphic disorder, and gender identity disorder—that at first glance may seem entirely psychological, but may be linked to physical differences in the brain. "In studying the hinterland between neurology and psychology, we can tell not just about people with conditions themselves, but how all our brains work," says Paul McGeoch, a neurologist at the University of San Diego who is currently doing brain scans on people with BIID. McGeoch's research may help answer the fundamental question: is BIID a mental illness or a hard-wired identity?

Those who congregate on the dozens of Web sites for people who identify themselves as having BIID say that safe and legal surgery, or a medically supervised way to become a paraplegic, is the only solution for their problem. (While researchers have interviewed dozens of BIID patients, there are no estimates of how many people are afflicted. However, transabled.org claims 1,500 visitors per day, while a Yahoo Web group of BIID suffers who say they are resisting the urge to amputate has 1,700 members.) They are most often white middle-aged males who refute the idea that the disorder can be treated like a mental illness with talk therapy and medication. They describe a persistent, torturous chasm between their mind's image of their own body, and the physical body they inhabit. They say their urge to "right" themselves is overwhelming. Controversially, some people who say they suffer from BIID draw parallels to the transgender community. They point out that it took years for people who felt they were born into the wrong gender to convince the medical and psychiatric professions to recognize their plight, and that transgender individuals are now protected by anti-discrimination laws in many cities and states.

"Nothing touches it, other than surgery," says Sean O'Connor, who runs the Web sites transabled.org and biid-info.org. "Psychotherapy doesn't work. Psychiatry doesn't work. Medication doesn't work. I'm a pretty typical example of someone who's attempted a [number] of ways to address the problem, done years of therapy of many types, including cognitive-behavioral therapy, and nothing helps." O'Connor says he identifies as someone with BIID, and uses a wheelchair, but has not taken the final step of finding a way to paralyze his legs.

While the idea of deliberately becoming disabled could seem offensive to disabled advocacy groups, the ones Newsweek contacted were reluctant to pass judgment. "Certainly, there are some who would be repulsed by the idea that someone would intentionally disable themselves," says Nancy Starnes, senior vice president at the National Organization on Disability, noting that according to the Americans With Disabilities Act, anyone who appears to have a disability is protected. "But I think they would be treated the same way anybody with a mental health problem would be treated."

Dr. Michael First, a professor of clinical psychiatry at Columbia University in New York, has been trying to gain insight into the disorder and the question of how to treat it. In 2004, he conducted a study of 52 people who identified as amputee-wannabes. He found that they were far from psychotic. "You almost have to see it to believe it," First says. "These people say, 'Every minute of my life I feel like something is wrong.' But it doesn't impair their ability to relate to other people. They are completely in touch with reality."

First is campaigning for the disorder's inclusion in the next Diagnostic and Statistical Manual of Mental Disorders (DSM), the Bible of the psychiatric field, slated for publication in 2012. For sufferers, inclusion in the DSM would legitimize what they believe is a genuine identity trait. "The largest goal is to figure out the treatment for the people who have it," First says. He thinks that inclusion in the DSM could help pave the way. "Clearly, surgery has helped some people more than anything else. That's a fact."

As it currently stands, BIID sufferers have little option for treatment, and many of them take extreme and dangerous measures to amputate or paralyze themselves. One patient featured in Melody Gilbert's 2004 documentary Whole, froze his leg off with dry ice. Another blew one off with a shotgun. In one case, a man traveled to Mexico and paid $10,000 for an illegal amputation, only to die of gangrene.

Perverse and gory stories like that have become fodder for television dramas including CSI and Grey's Anatomy. And a new independent feature film starring Nick Stahl, Quid Pro Quo, tells the story of a paraplegic journalist who becomes involved with a shadowy world of disability "wannabes," who gather in a dim Manhattan basement in their wheelchairs and help each other track down people and methods to paralyze themselves. At the start of the film, set for June 13 release, Stahl's character gets a tip that a man has gone into a New York City hospital and offered a doctor $250,000 to amputate his leg.

In reality, there's only been one widely publicized case of a doctor performing amputations on healthy patients in modern times: Dr. Robert C. Smith, a surgeon at Scotland's Falkirk and District Royal Infirmary, who in January 2000, made headlines in the U.K. tabloids when it was revealed that he had amputated the legs of two patients with BIID. Dr. Smith argued that by preventing his patients from pursuing more life-threatening alternatives, he was following the Hippocratic oath to do no harm. But Dr. Smith's hospital disagreed. He was prevented from doing any further surgeries. (Other doctors in history have faced this same dilemma. In 1785, a man in France held a gun to the head of a surgeon, forcing him to amputate his leg, and later sending a thank-you note. "You have made me the happiest of all men by taking away from me a limb," he wrote.)

Surgeons who perform voluntary amputations today are understandably underground. Alex, a 60-year-old BIID sufferer, learned about a surgeon willing to amputate his leg five years ago and "jumped right on it," flying to Asia and paying $10,000 to have the limb removed. "The only regret I have is that I wasn't able to do it 30 years ago," Alex says. He calls himself "completed," and now works as a gatekeeper to the surgeon, who will not go public, operating a sort of ad hoc screening process, interviewing prospective amputees, and making sure they get psychological evaluations and complete physicals prior to the surgery. Alex, who also did not want his real name used, has even accompanied some patients to Asia; he would not reveal the exact location.

"There isn't a single one of us that enjoys having this," Alex says. "We're all trying to figure out how we got it and how to get rid of it. It's a mental torture. And the only way to get rid of it is by getting the surgery. Unfortunately, there's too many people that take it into their own hands and end up dying."

In his study, Dr. First saw some immediate parallels between BIID and gender identity disorder (GID) in which people feel that the gender they were physically born with is not their true gender. "[BIID] is not just about enhancing your appearance," he says. "This is much deeper. This is a sense of your core identity." Although many members of the transsexual community take issue with GID's inclusion in the DSM and its characterization as a mental illness, there is no question that gender reassignment surgery has become more acceptable in the last few decades, which has also paved the way for more funding and research into the disorder. (Advocacy groups for the transgendered contacted by Newsweek were reluctant to comment without knowing about BIID.)

Neurologists at the Center for Brain and Cognition at the University of California, San Diego, who have studied phantom limb syndrome (in which accidental amputees still feel pain in their lost limb), stroke victims, and GID have recently turned their attention to BIID. They've only been able to conduct three brain scans on those with BIID, so far, but in those, they have found some variation in the right parietal lobe, the area of the brain responsible for creating a "map" or the image of where one's body exists in space. "What's suggested from this is that because of this dysfunction in the right parietal lobe, this sense of unified body image isn't formed," says McGeoch. "The senses don't coalesce. So, for a leg, for example, they can feel that it's there but it doesn't feel like it should be there. It feels surplus. Something's gone wrong."

But some doctors are reluctant to chalk up the disorder to a hard-wired trait. Dr. Ray Blanchard, a professor at the University of Toronto and a member of the DSM work group (which decides which disorders are included in the manual), says that if amputee-identification really stemmed from the brain, there would be other symptoms beyond just the desire to amputate—it would be difficult to use the leg, for example, or there would be signs of neglect.

Blanchard thinks it's unlikely that surgery will ever be an option. "I can't see society in general accepting it," he says. "And I can't see medicine accepting it. Medicine is going to see it as conferring a disability on a patient. In that sense it's different from sex-reassignment surgery. Being a man or woman is not a disability." Still, Blanchard admits that some of the first patients with gender identity disorder faced some of the same obstacles. "There were some psychiatrists who saw [sex-reassignment surgery] as colluding with a patient's mental disorder. Instead of curing the patient of a delusion, you were validating it. But once again, all that had to be overcome there was that the patients really were happier as the opposite sex."

Some conservative voices in the medical community feel that the normalization of sex-change surgeries was the start of a slippery slope. "You keep pushing the envelope of impaired people who aren't in touch with reality in some fashion, who develop ideas about their normalcy," says Dr. Mark Schiller, a psychiatrist and past president of the Association of American Physicians and Surgeons. "Essentially from just claiming that something's the case, people just accept somebody's distorted version of reality and then we get surgeons and others responding to the point of mangling normal bodies."

Of course those who say they suffer from BIID may define normality differently. For now, sufferers are focused on getting official recognition in the DSM, which could open the door for more research funding. While not everyone agrees, an anonymous user called "TS" on transabled.org seemed to sum up a common view: "I don't see mental illness as being a bad thing for BIID to be labeled as, at least for now. ... Even if current BIID sufferers don't reap the rewards of their efforts to get it known, at least they may know they have given BIID people of the future a better chance of a mentally satisfactory life. Living a lie is the worst human punishment."

This article appears in Newsweek magazine under the headline "Cutting Desire"