“When I was a child, I thought like a child, I reasoned like a child; when I became a man, I gave up childish ways. For now we see in a mirror dimly, but then face to face.”
- Paul (d. ca. A.D. 64) 1 Corinthians 13 ca. 56
“The life we lose through forgetfulness resembles
The earth that sticks to the sides of ploughshares
And the eggs the hen has abandoned in the woods.”
- Robert Bly
BIID (Body Identity Integrity Disorder): Philosophical or Medical Issue?
“’Show me where your wooden leg joins on,’ he whispered….She was as sensitive as a peacock about his tail ...’It joins on at the knee. Only at the knee. Why do you want to see it?’…’Because,’ he said, ‘it’s what makes you different.’…The artificial limb, in a white sock and brown flat shoe, was bound in a heavy material like canvas and ended in an ugly jointure where it was attached to the stump….The boy’s face and his voice were entirely reverent as he uncovered it and said, ‘Now show me how to take it off and on.’…She took it off for him and put it back on again and then he took it off himself….’See!’ …’Now I can do it myself!’ ‘Put it back on,’ she said….’Not yet, he murmured, setting it in its foot out of her reach. ‘Leave it off for a while. You got me instead.’ ‘Give me my leg,’ she said….He pushed it farther away with his foot.’…’Give me my leg!’ She screeched….She saw him grab the leg and then she saw it for an instant slanted forlornly across the inside of the suitcase with a Bible at either side of its opposite ends. He slammed the lid shut and snatched up the valise and swung it down the hole and then stepped through himself. When all of him had passed but his head, he turned and regard her with a look that no longer had admiration in it. ‘I’ve gotten a lot of interesting things,’ he said. ‘One time I got a woman’s glass eye this way.’ And then the toast-colored hat disappeared down the loft hole and the girl was left, sitting on the straw in the dusty sunlight. When she turned her face toward the opening, she saw his blue figure struggling successfully over the green speckled field.’”
- Flannery O’Connor, “Good Country People,” 1955
When I last wrote about BIID, my conviction was that having a limb removed, or achieving self-paralysis, or deafening and blinding oneself, was a personal choice, and that the issue of BIID was fundamentally a philosophical rather than medical question. But after further consideration, and some light research on the beach, I’ve come to rethink my position. What got me thinking about this was an essay in the 6/30/08 New Yorker by Atul Gawande, an associate professor at the Harvard School of Public Health, entitled, “The Itch.” Ostensibly, this piece takes up the topic of itching, but within it lies an embedded discussion on the phenomenon of human perception.
The following excerpts from a recent blog outline my earlier thoughts on the BIID issue:
“Writing in the “Journal of Applied Philosophy, Vol. 22, No. 1, 2005, Tim Bayne and Neil Levy argue that, regarding the moral arguments against what I will call ‘assisted disability,’ ‘BIID sufferers meet reasonable standards for rationality and autonomy: so as long as no other effective treatment for their disorder is available, surgeons ought to be allowed to accede to their requests.’ For me, as in the case of assisted suicide and abortion, the issue is one of free choice. Given that one is of age and sound mind, and insofar as a respect for the rights of others is in place, one can do with their body as they wish. In a free democracy it should be assumed that “rationality and autonomy” are fundamental to guaranteeing the free agency of all citizens.”
“Bayne and Levy rightly conclude: ‘In an important sense, a limb that is not experienced as one’s own is not in fact one’s own. Disorders of depersonalization are invisible to the outside world: they are not observable from the third-person perspective in the way that most other disorders are. But the fact that they are inaccessible should not lead us to dismiss the suffering they might cause’”(85).
What in Gawande’s essay has swayed me from my former convictions? The traditional view on human perception, which is still the prevailing paradigm, is what Gawande calls the “direct-perception” theory. In a nutshell, this assumes that sensations like cold, distance, color, hardness, itchiness, and such are stimuli our nerves, for instance tactile or retinal nerves, encounter. After which they send signals through the spinal cord, which are then decoded by the brain. Sounds logical. But how then do we explain dreams, hallucinations, and phantom limb pain? My eyes may see the point across the bay, but perspective and dimensionality are reconstructions that ultimately involve subjective imaginings that create individual representations. Consider the oft-repeated example of asking a group of witnesses about how they perceived a certain event, and then getting wildly different interpretations of what they saw.
The error in equating strictly biological reception with perception is nowhere more evident than in the case of phantom limb sensations. Gawande makes the point that invasive surgical procedures meant to quell phantom limb pain have been documented as being largely unsuccessful: “The feelings people experience in their phantom limbs are far to varied and rich to be explained by the random firings of a bruised nerve. People report not just pain but also sensations of sweatiness, heat, texture, and movement in a missing limb. There is no experience people have with real limbs that they do not experience with phantom limbs. They feel their phantom leg swinging, water trickling down a phantom arm, a phantom ring becoming to tight for a phantom digit”(63).
So what’s the alternative to the “direct-perception” theory, and how does all this apply to BIIDS? Bear with me, dear reader. The emerging alternative is what Gawande calls the “brain’s best guess” theory of perception. A bit unwieldy, but as Gawande describes it, “perception is the brain’s best guess about what is happening in the outside world. The mind integrates scattered, weak, rudimentary signals from a variety of sensory channels, information from past experiences, and hard wired processes, and produces a sensory experience full of brain-provided color, sound, texture, and meaning”(63).
If phantom limb pain explains why the mind, rather than strictly sensory processes, is involved in perception, then the idea that BIIDS wannabes’ desires are a matter of conscious choice comes into question. As Gawande points out, it is medically documented that some stroke patients experience a “condition known as hemineglect, which produces something like the opposite of a phantom limb—these patients have a part of the body they no longer realize is theirs”(65). While Gawande’s essay makes no mention of BIID, I immediately thought about the common BIID complaint that they see their limb as an alien appendage. But is this belief a medical or philosophical matter?
There are what Gawande calls, “sensor syndromes,” whereby pharmaceutical treatments fail in the face of sensations “unmoored from physical reality.” Again, consider the case of Robert Vickers: “I couldn’t even get ‘Elementary Suicide’ right. I was severely handicapped, but diagnosed as ‘clinically depressed.’ Psychiatrists treated me without success. None of their tranquillisers and antidepressants worked, but then I could not tell them what was really wrong, what my handicap was. It was too weird, too painful to tell anyone about; it was just there, festering away, destroying me. Two years later, I tried to cure my handicap and failed. This time I got more drugs, more psychiatrists, shock treatment and unwanted surgery over three months in hospital. I told the doctors what I wanted and didn’t get it, but was still too ashamed to tell them why.”
According to Gawande, “sensor syndrome” is akin to that errant dashboard light that says check engine, which in my case was on for the life of my last car, which was about 8 years. So, in cases like phantom limb sensation and BIID, the problem is not of somatic origin, but one of a sensor gone haywire. Which is why, as Gawande suggests, “typically, no amount of imaging, nerve testing, or surgery manages to uncover an anatomical explanation”(65).
This perhaps explains why BIID wannabes can’t conceptualize questions like, “Would you want to rid yourself of this desire,” or, “Don’t you think this is a compulsion rather than a choice?” While I haven’t gone into Gawande’s discussion of a “mirror based immersive visual-reality System” that has effectively treated phantom-limb pain, imagine a pair of glasses carefully adjusted so that a wannabe would perceive their limb as missing. What would we make of the fact that their desire to rid themselves of the alien limb was gone? And further, what does this say about the origin of their desire in terms of choice versus compulsion?
Until next time – Randy Tessier
July 24, 2008
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6 comments:
i must admit to not only having no idea that biids existed, but being quite disturbed by that picture of the torso guy wiggling around with the pencil-pointer thing in his mouth. I kept thinking (for days); how do you put your ear ring in, or button up that sweater, or wipe your ass. it is my opinion that if these whack jobs need to amputate something, hows about starting with their heads. and leave the rest of us alone.
bill, I'm sorry for living and being such a burden on you. I can only admire your level of compassion...
On a less sarcastic note:
Randy, I'm glad you're reconsidering. BIID has never been a philosophical question for me. It is not a question of choice or preference. I never asked to feel this way.
You might be interested to know that V.S. Ramachandran and Paul McGeoch, neurologists out of UCSD are currently finding evidence that BIID may be caused by "faulty wiring" in the brain. They are still researching and collating MRI scans of individuals with BIID, but the early evidence appears pretty convincing.
However, even knowing that there's a problem in the brain, sometimes the only solution is indeed acquiring the impairment we need. Bayne & Levy have it right. "if there's no other way to help, then surgery should be viewed as appropriate". Nothing else helps, so let's provide a surgical solution.
Perhaps in 15 or 25 years we'll know more and understand BIID better, and have found less invasive solutions, but in the meantime, those of us with BIID are living in hell and are effectively disabled - I am much more disabled (unable to function, work, etc) by the BIID than I ever would be by being paralysed.
Interesting, as usual. A few thoughts...
"My eyes may see the point across the bay, but perspective and dimensionality are reconstructions that ultimately involve subjective imaginings that create individual representations."
As an artist, I have often thought about this. When I "see" the color red, am I experiencing the same sensation that another person is experiencing, in other words, seeing the same color?
"...imagine a pair of glasses carefully adjusted so that a wannabe would perceive their limb as missing."
Of course, in terms of the physical qualities of optics, this would be impossible, but it is an interesting thought. Basically, you are talking about tricking the subject into not being able to perceive the limb that is in actuality still there. I'm wondering about hypnosis-- could someone be hypnotized into believing that their limb was missing? Hypnotism seems like an obvious thing to try; I would guess that maybe it has been tried but is not effective.
"...what does this say about the origin of their desire in terms of choice versus compulsion?"
What is it that causes a person to be sexually attracted to another person; what takes it to the next level of compulsion or obsession? I am reminded of the film Eternal Sunshine of the Spotless Mind-- if we could, say chemically or otherwise, attempt to cleanse a person's mind of a compulsion or obsession, how hard would they fight to hang onto it? This could have to do with a desire for the compulsion or obsession; in other words, if the compulsion/obsession were removed, might the desire still remain?
RJ, hypnosis has been attempted, by most of the people I know, and it doesn't work.
Whether there is a way to trick the mind into thinking that the leg is not there, or that the legs are paralysed, *or* we trick the mind in accepting that the limb being there is ok, that is probably the pair of "glasses" we'd need. And perhaps such glasses, such a solution will be found in the future.
Don't deny me the only source of peace currently known because *maybe* something better waits for me in the future. Bird in one hand and all that...
Bill,
You might better serve yourself by feeling relieved that these are not your own compulsions. No doubt you've known people with urges to substance abuse ( you're a Yooper, fergawdsakes), eating disorders, promiscuity in the face of fatal illnesses or divorce, etc. These drives make little sense to those who don't experience them first hand but can be just as self-damaging as this BIID topic.
Neurology is quite a tangled web, literally. At the moment I'm working with a drug company proposing to bring a drug onto the US market that deals with devastating itchiness associated with end stage renal disease. (Uremic pruritis) Sufferers have been known to scratch through their skulls into the brain in search of relief. Scratching can't help as it's a neural itch, not a dermal itch. Scratching cannot help. The nerves are firing in the brain with no message given by the skin. (Hmmm! Maybe it makes sense to scratch through the skull after all.) They're not whack jobs, it's just that their nervous systems have sustained damage from their condition. This condition is not elective. In that sense it feels, despite my admittedly limited knowledge of the condition, related to BIID in its relentless insistence on itself.
The nervous system offers some very odd conditions which are only perfectly natural to those who experience them. Here's a favorite example: In a jam at a California music festival with 5 other players, it turned out that three of them experienced different musical keys as colors. All of their colors clashed or disagreed, but they each felt that every key represented a specific and static color. C Major was white for one, blue for another, orange for the third, but they all had set colors for each key. Peculiar to most of humanity, but perfectly normal in their lives. This is a neural condition called synesthesia, wherein people hear textures, see flavors, etc. Fascinating, really. It's often a poetic device and may have had its origins in this condition. (See "The Man Who Tasted Shapes" by Richard E. Cytowic)
So relax and crack open a great sounding beer and enjoy some colorful music.
The skin disease is known by multi-colored fiber-like (filamentous) strands extruding from the skin!
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