Breath & Shadow
A Journal of Disability Culture and LiteratureWinter 2017
Breath and Shadow
Volume 14 Issue 1
The Dilemmas of Body Integrity Identity Disorder
By Denise Noe
To many who live with disabilities, a cure is a cherished dream. To almost anyone, the idea that someone would want a disability seems perverse. People automatically react with the colloquially dismissive term “crazy” to the concept of an able-bodied individual seeking a physical handicap.
Yet such people exist and their condition has a name: Body Integrity Identity Disorder (BIID). Although the condition itself can be considered a mental disorder, the disabilities yearned for are invariably physical. A person with BIID may want to amputate a limb or limbs, to become paralyzed, or to be deaf or blind. The disorder is extremely rare.
Columbia University psychiatry professor, Dr. Michael First, who has extensively studied this disorder, is the person who named it Body Integrity Identity Disorder.
Those with this condition are also called transabled, a term analogous to transgendered. Indeed, it seems likely that the media frenzy surrounding the transformation of Bruce Jenner into Caitlyn Jenner might have led to the recent media interest in the “transabled.”
However, some transgendered activists object to viewing the conditions as analogous. The objection is based on the idea that male and female are both normal, healthy states so the person who wants to go from one to the other is not similar to an able-bodied person who wants to lose a limb or physical ability.
It is important to recognize that the curiosity of someone who wants to experience what it is like to get around in a wheelchair or navigate in the darkness does not constitute BIID. People with BIID suffer a persistent, nagging feeling that something is “wrong” with their bodies because the limb or ability is not “supposed” to be there. This sense of something “wrong” begins in childhood.
For example, computer technician David Openshaw recalls believing from the age of four or five that his right leg below the knee “just didn’t belong there.” He knew it was “normal” to have a lower leg and that his lower right leg functioned normally, but he was tormented by the wish that it “would just fall off overnight” and equally tormented by the knowledge “that it would not.” Jewel Shuping states, “When I was twelve or thirteen, I was legally blind without my glasses. About that time was when I decided I should have been born blind.” She felt strongly that she should not be seeing at all. Chloe Jennings-White remembers believing when she was ten years old that her legs should not work or have any feeling in them. When she was alone as a youngster, she often bandaged her legs or crafted a makeshift leg brace. Since her childhood, she has believed that she should be a paraplegic.
What causes this rare and puzzling disorder?
The Defective Brain Map
It has been speculated that people with this condition experienced a lack of normal attention and affection in early childhood. Thus, they view being disabled as a way to gain sympathy with the resulting attention and affection that was denied them. However, this psychological explanation does not seem to fit the particulars of BIID. For one thing, people with the disorder often report having had healthy, affectionate families and enjoying happy childhoods with the only thing marring their childhoods being the persistent sense that a limb or usual physical ability should not be there. David Openshaw says he was raised in a happy family and did all the things boys usually do when they are growing up. The only thing that bothered him was the presence of his lower right leg.
The resistance of the disorder to improvement through talk therapy also works against these psychological explanations. No amount of attention from a therapist lessens the desire of a BIID sufferer for a specific disability.
It is the very specificity of the BIID desire that suggests a physical root for the disorder. Dr. Vilayunar Ramachandran, a neuroscientist at the University of California at San Diego, observes of BIID sufferers who want amputations, “They will draw a very specific line. If it were a cry for help or a desire for attention, why would the exact line matter so much?” This specificity strongly suggests to Dr. Ramachandran that BIID is a neurophysiologic problem.
Other scientists who have studied the disorder agree. Peter Brugger of the University of Zurich in Switzerland, ,who is an expert in both neuropsychology and abnormal psychology, comments, “Why would a vague desire to be handicapped show itself as a precise need to be amputated two centimeters above the knee, for example? I certainly think it’s more a representational deficit in the brain in all cases than a psychological need for attention.”
A Mindscapes article by Helen Thomson states, “It almost certainly stems from a problem in the early development of the brain.” The part of the brain with the problem is probably the parietal lobe that is the site of complicated brain networks that “map” the body. It is likely that BIID sufferers have a defect in this area. That defect means the brain fails to recognize a usual body part or ability as part of the body. Thus, the person has the persistent conviction that it just should not be there.
This theory received reinforcement when Dr. Ramachandran and colleagues tested brain activity in four people with BIID. Testers touched different parts of the body in the subjects. Their parietal lobes lit up normally in the areas they wanted to keep and showed markedly less activity in those they wanted to lose.
However, there are scientists who question the defective brain mapping explanation for BIID. One of those is Dr.Ray Blanchard, a researcher at the University of Toronto’s School of Psychiatry. Writing for Newsweek, Jesse Ellison reports that Dr. Blanchard believes that ifthe the problem “really stemmed from the brain, there would be other symptoms beyond just the desire to amputate” such as difficulty in using the affected limb. Even Dr. Ramachandran admits that the evidence for BIID being a brain disorder, while “compelling,” is not “conclusive.”
The Desperation That Leads To Self-Disabling
David Openshaw always believed he must be the only person in the world who wanted to get rid of a healthy limb. Although constantly tormented by this desire throughout his childhood and adolescence, as an adult he began a career as a computer technician, married, and started raising children. Surfing the Internet one day, he came across a website devoted to “amputee wannabes” and learned that his condition was called Body Integrity Identity Disorder. He was comforted to know he was not the only one with this problem, and that it had a name. He sought professional help. However, no form of psychotherapy could rid him of his torment. He lives in Australia, a country in which doctors are not legally permitted to amputate healthy limbs. He finally decided he could no longer live with the hated part of his right leg. On March 8, 2008, he put his lower right leg into a bucket of dry ice. The procedure was very dangerous and could have triggered a fatal blood clot or led him to suffocate from the fumes. When his girlfriend came home, she called an ambulance. Doctors hoped to save the leg despite learning of Dave’s desire. However, after about a week, they had no choice but to amputate to save his life. Today he uses a prosthetic limb to get around and has no regrets. He reports the amputation led to great mental relief and a much higher quality of life.
Jewel Shuping researched different ways of blinding oneself. She recalled, “I decided on drain cleaner because it was easy to get.” She says that in 2006 she found a psychologist who was willing to blind her. However, we only have her word to go on as to how she became blind. The Dr. Phil Show contacted the person she named to them – she has never publicly identified the individual – and asked that person about this. The psychologist replied, “I do not know this person. I did no such thing. I do not know why she has brought me into this.” Jewel insists that the psychologist first put numbing drops into each of her eyes and then put drops of drain cleaner into each eye. “It hurt, let me tell you,” she recalls. She describes her eyes as “screaming” but says she thought, “I am going to be blind, it’s going to be Okay.”
According to Jewel, the psychologist followed their plan to wait half an hour and then drive her to a hospital emergency room. The two of them lied to medical personnel and said drain cleaner had accidentally gotten into her eyes. Doctors struggled to save her eyesight. She said when she awoke the next day, she was “joyful”–until she turned around and saw a TV screen. “I was so enraged,” she recalled. “I thought it hadn’t worked.”
But it had “worked.” It took several months, but her vision continually diminished. Eventually one eye had to be removed. The other had developed both glaucoma and cataracts so she lost all vision in the remaining eye except for a small amount of light and shadow.
Jewel does not regret it. “I’m very happy as a blind person,” she asserts. However, her realization of her longtime wish has not been without cost. Her family stood by her when they believed she was blinded through an accident. When they learned the truth, her mother and sister stopped speaking to her.
Because of fears that his family will not understand, the man who calls himself One Hand Jason will not allow his real name to be known. His BIID meant that he felt that his right hand should not be there. Like Jewel, he devoted extensive time to researching how to get the desired disability. He bought animal legs from a butcher and practiced cutting them. Finally, he cut his own unwanted hand in a way he knew would make it impossible for surgeons to reattach it.
People with BIID have taken chain saws to unwanted limbs, shot themselves, and done many other things to get rid of the area or ability that tormented them. Robin Marantz Henig writes in The New York Times, “In May 1998, the urge drove one man to a California surgeon who had lost his license more than 20 years earlier for several botched attempts at sex reassignment surgery. At a clinic in Tijuana, the surgeon, John Ronald Brown, 77, cut off the left leg of Philip Bondy, 79, of New York, who had paid him $10,000.” Bondy died of gangrene two days later and Brown was charged with second-degree murder.
Conflict in the Disabled Community
Since the vast majority of disabled would consider it a dream come true to become able-bodied, it comes as no surprise that some disabled people are unsympathetic to those with BIID. Paddy Rossbach lost a leg in childhood and is Amputation Coalition of America President. “It’s very difficult for people who have been through what they consider a devastating life experience to understand why anybody would want to mutilate himself in this way,” Rossbach observes. She elaborates that some amputees believe BIID people are “minimizing what they themselves have been through.”
Nancy Starnes is Senior Vice-President of the National Organization on Disability. She remarks, “Certainly there are some who would be repulsed by the idea that someone would intentionally disable themselves, but I think they would be treated the same way anybody with a mental health problem would be treated.”
Jewel Shuping suffered much trepidation in going public with her story. She feared her blind friends might react negatively when she informed them of how she took her own vision. However, she was relieved to find that her friends did not condemn her, with one blind person commenting, “I’ve never known anyone before with that disorder. I’m sure there’s a lot not understood in the medical community.”
What Should Be Done?
Sean O’Connor has BIID. He wants to be a paraplegic and uses a wheelchair although he is not paralyzed. He runs two websites about the disorder, biid-info.org and transabled.org. He observes that traditional therapies fail to change the sense of “wrongness” that is BIID. “Psychotherapy doesn’t work,” he comments. “Psychiatry doesn’t work. Medication doesn’t work.”
Would it be ethical for a doctor to deliberately inflict a physical disability on an able-bodied person who wanted the disability? Surgeon Dr. Robert Smith of Scotland’s Falkirk and District Royal Infirmary performed two amputations on BIID people in the late 1990s, in both cases removing one leg. Newspapers in the United Kingdom reported on these operations in January 2000. Dr. Smith said he operated to ensure the people would not self-injure. However, the Falkirk and District Royal Infirmary ordered that he not do any other such surgeries.
As previously noted, such surgeries are illegal in Australia. The United States also outlaws them. Even in countries in which they may not be illegal, medical organizations may prohibit them. Nevertheless, some physicians will operate to inflict a disability that is desired by those with BIID. Chloe Jennings-White says she has found a surgeon who will cut her sciatic and femoral nerves, thus rendering her paralyzed below the waist, but she cannot yet afford the fee the doctor has demanded.
In Newsweek Ellison writes of “Alex” who found a surgeon in Asia willing to amputate the BIID sufferer’s leg for $10,000. After having his leg removed, Alex began working “as a gatekeeper to the surgeon.” Alex performs an “ad hoc screening process, interviewing prospective amputees ,and making sure they get psychological evaluations and complete physicals prior to the surgery.”
Dr. Blanchard doubts surgeries that give BIID people what they crave will ever enjoy widespread approval. “I can’t see medicine accepting it,” he asserts. Dr. Mark Schiller, a psychiatrist and past President of the Association of American Physicians and Surgeons, also doubts that medical ethicists are apt to condone what he calls “mangling normal bodies.”
The ancient injunction “first do no harm” is often cited as absolutely prohibiting such an action. However, it should be noted that “first do no harm” is not interpreted literally in much of medicine. After all, surgery is routinely performed although a superficially literal interpretation of this injunction could be viewed as violated by the actions of cutting into an individual. An argument in favor of such surgeries is that people with BIID would be prevented from trying to disable themselves since such efforts can easily be catastrophic. Alex comments, “There’s too many people that take it into their own hands and end up dying.”
Perhaps we can consider BIID a disability – a mental disability -- in and of itself. Thus, a doctor could be viewed as treating an extremely stressful mental disability by inflicting a physical disability that the patient finds much easier to manage than the previous mental disability.
Ultimately, the best thing for people with BIID would be a treatment that would lead the brain to properly map all the parts and abilities of their bodies. In the absence of such a treatment, BIID raises many uncomfortable questions, the answers to which are neither obvious nor easy.
“18 of the Most Intense BIID Stories.” News Rook.
Boesveld, Sarah. “Becoming disabled by choice, not chance:‘Transabled’ people feel like imposters in their fully working bodies.” June 3,2015. Canada National Post.
“Body Integrity Identity Disorder. http://www.biid.org
Ellison, Jesse. “Cutting Desire.” Newsweek. 10/28/11.
Henig, Robin Marantz. “At War With Their Bodies, They Seek To Sever Limbs.” March 22, 2005. The New York Times.
“I Made Myself Blind: Living With BIID.” Barcroft TV.
“NGC – Taboo – B.I.I.D. Body Integrity Identity Disorder –David Openshaw.” https://www.youtube.com/watch?v=frbssKzRvVA
“Woman desperate to be blind had drain cleaner poured in eyes, now happier than ever.” Oct. 1, 2015. Fox 31 Denver.
“Woman wants to be permanently paralyzed: Body IntegrityIdentity Disorder.” Barcroft TV. https://www.youtube.com/watch?v=7xujgH_C2q8
Denise Noe is a struggling writer who is disabled by schizotypal personality disorder, impulse control disorder, obsessive and compulsive disorder, clinical depression, and chronic lower back pain. She is interested in literature, film, math, geology, and social welfare issues.