June 18, 2008

Eng. 325 Student Essay BIID (Body Integrity Identity Disorder)

NOTE: THERE ARE 4 OTHER BIID POSTS ON THIS BLOG.
1) BIID: "ASSISTED DISABILITY": A TEACHER'S ESSAY
2) BIID: PHILOSOPHICAL OR MEDICAL ISSUE?
3) ABOUT BIID
4) FOR MY GERMAN BIID FRIENDS: STRICTLY QUALITATIVE

“All knowledge is of itself of some value. There is nothing so minute or inconsiderable, that I would not rather know it than not.”
-- in Boswell, “Life of Johnson,” 1775

One of the questions I’m often asked concerns the nature of the student essays I receive. Typically, I have a set of guidelines, assignment guides, and rubrics that keep the students on track in terms of style, strategy, and purpose. In the upper level sections, however, like Eng. 325, I sometimes allow them to select a topic of their own choosing. Here is one such paper. This is the final draft of an essay I already edited and made comments on. So, while there may still be some syntactic and semantic glitches, you be the teacher. And, yes, I have seen a variety of weird topics and crazy confessionals.



Michael Bigelow
Randy Tessier
ENG 325

Off to Here Please

“In that instant, that very first encounter, I knew not my leg. It was utterly strange, not-mine, unfamiliar. I gazed upon it with absolute non-recognition [...] The more I gazed at that cylinder of chalk, the more alien and incomprehensible it appeared to me. I could no longer feel it as mine, as part of me. It seemed to bear no relation whatever to me. It was absolutely not-me—and yet, impossibly, it was attached to me—and even more impossibly, continuous with me.”

In "A Leg to Stand On," Oliver Sacks, noted author and neurologist, eloquently describes the effect a mountain climbing accident had upon his body image. During his fall his quadriceps muscle was torn from his knee and his femoral nerve was severely damaged. This injury resulted in the loss of the mental “image” of his leg. He rationally knew that his leg was his, but he couldn’t think to move it, he couldn’t grasp the concept of it. Luckily for him, he did, eventually, regain consciousness of his leg and learn to walk again, but his initial experience was intimately similar to what sufferers of Body Integrity Identity Disorder, or BIID, experience throughout their lives.

Like most other body disorders, BIID is a condition in which the suffer experiences an awful discrepancy between their physical bodily form, and their idealized mental image of their bodily form. However, unlike more common conditions like Anorexia Nervosa or Bulimia, this condition relates specifically to the need for amputation of limbs.[1] The sufferer feels that there is something alien about that particular part of their body, and although the limb functions, it feels like dead weight. It’s not about the appearances or attention, but feelings. This is why this condition is most commonly compared to Gender Identity Disorder, because the individual does not feel as though their body matches their brain, and like GID, BIID often begins to manifest itself in the preadolescent years. Most sufferers are believed to successfully ignore the condition, rightly or wrongly so, but without treatment the condition often manifests itself in other ways like manic depression. Therapy is suggested, but, in this case, it’s like taking an Advil to treat a brain tumor. It treats the symptomatic pain to a degree, but can’t change the cause. The only thing shown to truly relieve the patient is surgery. This of course, brings up the question of surgical ethics. Should a doctor, sworn to protect the bodily health of an individual, amputate a healthy limb or not?

According to the BIID website, the initial feelings of BIID are thought to be triggered by the first sight of an amputee. The cause, however, as with many other uncommon desires, is under constant scrutiny. Some suggest the condition is driven by the need for attention, others say it’s the manifestation of some unresolved internal conflict, still others believe the sufferers to be sexual deviants: attracted to other amputees on the one hand—a condition known as acrotomophilia—or sexually motivated to become one themselves on the other—known as apotemnophilia. I believe that, as with sufferers of GID, BIID patients, are simply born and hardwired the way they are. It’s not insanity, just nature. This is why therapy doesn’t help cure the actual condition. Where it does help is in the diagnosis, the treatment any resulting symptoms of depression, and the acceptance of the person by themselves. The need for a safe and open environment is especially important for the diagnosis because of the eccentricity of the condition. Sufferers are often so afraid of revealing their condition that the table saw, for them, becomes safer than public opinion. Another problem is that this condition exists far outside the realm of acceptability for many therapists, and fear of that prevents patients from revealing their true thoughts. One of my friends in high school, for example, saw a therapist in our somewhat small and very conservative town. She was suffering from the occasional need for self-mutilation and a mild case of anorexia. The therapist did not want to hear about her alcoholic parents, or the lack of attention she got a school, but rather told her that mutilation of her body was against God’s will. That she needed to clean up her act to satisfy and glorify his name. Her condition was ignored, and she refrained from talking about her real problems. She lied to make the therapist and her parents think she was better. It wasn’t until college and the more open environment provided there, that she—finally—found some relief.

Many sufferers do hide their condition for years, but others are driven to desperate measures. In the June 2008 edition of Newsweek an article by Jesse Ellison describes such as case as that of Josh. Josh is an average man, who is now very happily one-handed. “‘It is a tremendous relief,’ he tells NEWSWEEK. ‘I feel like my body is right”’. The most incredible thing about his story is the number of risks he took to achieve it. First he tried crushing his hand under a truck, and then cutting it off with a table saw, until finally, after practicing on several animal legs[2], he succeeded with an unmentioned power tool. What his family thinks was a horrible accident was really a calculated decision that had been years in the making. According to Dr. Michael First, a professor of clinical psychiatry at Columbia University: “These people say, ‘Every minute of my life I feel like something is wrong.’” Like someone with GID, Josh was in touch with reality, but with that reality he faced a horrendous inner turmoil. He looked at his hand every day and thought… this isn’t me.

Neurologists at the University of California, San Diego, believe the condition is caused by a variation in the right parietal lobe, the area where the brain makes and keeps its map of the body. Dr. Paul McGeoch says that for them a “unified body-image isn’t formed,” sufferers “can feel that the limb is there, but it doesn’t feel like it should be. It feels like surplus. Something’s gone wrong”. This is why the condition has also been compared to Phantom Limb Syndrome. Sufferers of PLS often try to use their missing limb forgetting for a moment that it’s not there because they still have a sense that it should be. Sufferers of BIID may use the limb in question and suddenly realize it’s there. It’s like there’s some sort of unwanted symbiotic relationship going on. They don’t hate their bodies, they just think they need some work. Would a doctor willing to remove the limb in question be any less moral then one willing to precede with the countless other cosmetic procedures available?

This is the question Tim Bayne and Neil Levy ask in their article for Applied Philosophy: Amputees By Choice: Body Integrity Identity Disorder and the Ethics of Amputation. According to them the moral arguments against these operations are not compelling, and that if a person can rationally decide to proceed with the operation after trying every other form of treatment then that treatment should be permissible. To strengthen their argument they bring up the 1997 story of a Scottish surgeon named Robert Smith. After performing a healthy-limb amputation on a man who had consulted with many psychiatrists, he suddenly had an influx of requests for the same sort of operation, and it was only when the media broke the story, that there was a public outcry and the hospital asked him to stop performing the operation. Was this the right choice? Or is this just another attack of the concept of “normal” on the individual? The man, who had the lower half of his left leg removed, reported that the operation had bettered his life. Should his happiness, however bizarre it may sound to others, be denied, especially when it doesn’t harm others? Is a procedure like this any different then having plastics inserted into various cavities of the body to create a view others will appreciate? It’s considered acceptable that many woman have their toes shortened to fit into certain shoes and both men and woman inject poison into their faces to look better. Do sufferers of BIID suffer from the same sort of cosmetic need, or is their need almost more warranted because their desire rests, not in the quest for physical perfection, but for mental wellbeing. In any case, as with abortion, regardless of public objection, when there’s a will, there’s a way and the unregulated path can prove much much worse and costly.

Successful self-amputators now run websites that suggest relatively “safe” methods of getting rid of “alien” limbs, these include the use of a shotgun, wood chipper, or even freezing the limb with dry ice. When a hospital receives a patient like this they do what they are trained to do—try and save the limb. To come into the hospital begging for an amputation will get you a trip to the psychiatric ward, but only after your injuries are treated. Often too embarrassed to reveal that the wounds were self-inflicted, the sufferers must, begrudgingly, thank the doctor for the great work. This is why there will always be black market doctors.

The problem with a black market doctor is that they really just want your money, not to save you. Like many botched back-alley abortions, not many survive the procedures after the cash transaction. Take for instance a case presented by Applied Philosophy of a seventy-nine year old man who in 1998, died of gangrene after paying $10,000 for a black-market amputation. Cases like this again call into question, what’s the lesser evil? How do we as a society cope with this rare condition, does it concern us? One also has to wonder if more popular knowledge of this condition could “hurt” sufferers of this condition more. If more doctors are aware of the condition how much further will patients have to go to convince them to amputate?

Popular culture has recently started to explore this condition in the past decade. Quid Pro Quo, a 2008 movie directed by Carlos Brooks, is a mystery thriller chronicling the experience of wheelchair bound narrator, journalist Isaac Knott, after he receives an anonymous tip that a man is trying to bribe surgeons to remove his healthy leg for $250,000. His informant, woman who identifies herself as “Ancient Chinese Girl”, instructs Knott to attend what the New York Times calls the “sinister meeting of a support group of able-bodied people who secretly gather to use wheelchairs and crutches; they long to appear disabled in public, but are to ashamed to live out their fantasies.” Ancient Chinese Girl, aka a sexy museum worker named Fiona, actually has an intense desire to be wheelchair bound herself. The Times review continues with: “In Fiona’s mind the medical paraphernalia of paralysis has an erotic power similar to that of the accoutrements of sadomasochism. An elaborate brace, for instance, is the ne plus ultra in sexy lingerie.” What effect does this pop-culture analysis have on actual sufferers of the condition? Does it help or harm? On the flip-side, the people presented in the 2003 documentary Whole, directed by Melody Gilbert seem to present a more realistic view of the condition. Most of the people in her documentary are middle-aged men who have gone to the aforementioned extreme measures to get rid of certain limbs in order to feel whole. Her documentary provides interviews with psychologists and sufferers alike, and at this point in the conditions history, perhaps provides some sort of solace to those with the condition, rather than alienating them further.

Accepting difference is something our culture is slowly starting to do. Up to this point we’ve been going to court-ordered AA, but we don’t want to admit we have a problem. We are addicted to a norm that no one seems to fit. What we need to do is look at each individual and say, what’s your deal? What will make you function? Is there any more research we can do to help? Even though I can’t understand the desire for an amputation, I can understand that happiness is, ultimately, completely relative. Perhaps, even if this condition is proven treatable though medication, eventually, what’s the lesser of two evils now: making sufferers join a hidden subculture like the one described in Quid Pro Quo, or driving them out into the open, actual sentiments intact, and ready for discussion?

[1] Which limb is case specific.
[2]Butcher meat, not pets.

5 comments:

Anonymous said...

Wow! I saw a Jerry Springer episode about a year back he had on a guy who was like this. He had cut off is leg from the knee down and his arm below the elbow; and was planning more amputations. When asked why he said he felt better this way. He had done his leg and arm himself. He put his arm in a woodchipper and used a table saw for his leg. I don't know how someone could amputate their own body part but they must be in dire straits mentally.

This isn't Kansas Toto!
gl

Anonymous said...

I find it fascinating that most people plan their vacations with better care than they plan their lives. Perhaps that is because escape is easier than change.

Sean said...

First off, I must say, I am impressed by the quality and insight of this essay. The author does not get everything right, but makes many statements that are *right on*. Thank you.

I am someone who has BIID. I need to be paralysed. I have been feeling like this for over 35 of my 40 years. It is not something I have control of. It is not something sexual (though it is for some people).

One thing to correct is in the very opening statement, saying that BIID is only for people who need an amputation. That is innacurate. Recent research is confirming that the condition may also manifest by people needing to be paralysed, or blind, or deaf, etc.

I am the owner of http://biid-info.org which is a resource for information about BIID, and contains the majority of published research about BIID. I am also the founder and principal author of http://transabled.org a multi-authored blog about the experience of living with BIID. These two sites might be of interest if you wish to learn more about the condition.

Anonymous said...

first and foremost, id like to congratulate for the best essay made. I am a teacher so i know what a good essay is. as for the content, i am fascinated also. we need to value life.

Anonymous said...

Hey