I had never heard of Body Integrity Identity Disorder, or BIID, until I read about it Blueheron’s livejournal.
So what is BIID? From an article in the Atlantic Monthly:
Folks with BIID are folks who want to have healthy limbs chopped off so that their external self can match their internal, idealized self. Some of these folks actually go through with it, cutting of one or more limbs. Although people with BIDD are rare, the condition – at least anecdotally – appears to be becoming more common.
The Atlantic author brings up an interesting question: Does the existence of a diagnosis and treatment (in this case, amputating a limb or limbs) for a condition increase the prevalence of the condition in society?
But it is possible to imagine another story: that our cultural and historical conditions have not just revealed transsexuals but created them. That is, once “transsexual” and “gender-identity disorder” and “sex-reassignment surgery” became common linguistic currency, more people began conceptualizing and interpreting their experience in these terms. They began to make sense of their lives in a way that hadn’t been available to them before, and to some degree they actually became the kinds of people described by these terms.
I don’t want to take a stand on whether either of these accounts is right. It may be that neither is. It may be that there are elements of truth in both. But let us suppose that there is some truth to the idea that sex-reassignment surgery and diagnoses of gender-identity disorder have helped to create the growing number of cases we are seeing. Would this mean that there is no biological basis for gender-identity disorder? No. Would it mean that the term is a sham? Again, no. Would it mean that these people are faking their dissatisfaction with their sex? No. What it would mean is that certain social and structural conditions — diagnostic categories, medical clinics, reimbursement schedules, a common language to describe the experience, and, recently, a large body of academic work and transgender activism — have made this way of interpreting an experience not only possible but more likely.
So the existence of sex reassignment surgery – and of an increasingly active and visible transsexual community – may be increasing the number of people who genuinely and sincerely need to have their sex changed. And a similar dynamic, ten or twenty years from now, may lead to a huge increase in the numbers of people who go to doctors and ask for a limb or two (or four) to be removed.
As blueheron points out, for those of us who are supportive of sex-change operations for transsexuals, it can be hard to find a reason to oppose amputations for folks with BIID:
1) Visceral horror and a conviction that anyone who wanted to have their limbs amputated was sick and needed immediate psychological help
2) A somewhat uncomfortable understanding of how closely this phenomena paralleled other people’s questions about gender identity.
3) An awareness that my beliefs about personal choice and responsibility means that by my own morals, these people should have access to the surgeries they want.
That’s pretty much where I stand. The Atlantic article quotes a young woman who plans to have both of her arms cut off. That horrifies me, and yet – assuming she is sane – I cannot see a justifiable reason to not allow her to control her own body. Subjectively, I am horrified by the idea of someone choosing to be crippled; but I realize other people are just as horrified by the idea of someone choosing to change sex. My horror is my own problem, not the problem of someone with BIID.
Objectively I don’t think a life lived without arms is any less important, or potentially any less fulfilling, than a life with arms. So if someone feels they need to have a doctor remove their arms to obtain happiness, on what grounds could I disagree?.
Just testing to see if it will actually work this time
OK, weird.
Anyway, as I said before:
I think these people have read Geek Love a few too many times.
I do hope there’s serious psychological counseling beforehand (as with SRS) before amputation is allowed.
And, as with SRS, I strongly believe that there are more societal factors than any sort of inherent biological factors in determining this desire for amputation.
I’ve never understood “sex-change” operations in the first place, particularly when viewed as an actual change in gender.
Such things are impossible. A man who undergoes such an operation is still a man when it is over, only without a penis and with a mockup of female genitalia.
I have a suspicion that many psychological problems are being “validated” and accepted. I’ve recently encountered depressed people who justified cutting themselves on similar grounds.
Whether you like it or not, Body Integrity Identity Disorder is a desire to have oneself mutilated.
Having social constructivist tendencies makes me sympathetic to the notion that creating a label can easily “create” a condition to replace what might otherwise have been a more amorphous malaise. Sometimes, that’s the whole point in creating a label. Back when there was no label for AIDS, people just died of various respiratory infections without effective diagnosis or treatment. Alcoholism would be entirely untreated if it was still diagnosed as a moral rather than a medical condition.
The issue for me isn’t so much “are these conditions socially created?” as “what normative standards should we use in treating them?” Even if we conclude something is socially constructed, that doesn’t make it any less real.
I’ve never really come to any conclusions about gender reassignment, and if I’m going to be totally honest about it, I suspect the whole subject makes me a bit uncomfortable. The same thing really does apply here. Are people happier or better able to conduct their lives after gender reassignment/voluntary amputation? Do they seem better adjusted? I don’t know, although I’ll bet the answer is “some are and some aren’t” in both cases.
Scott, as I’ve argued in the past, the evidence that exists seems to indicate that sexual reassignment surgery (SRS) is generally quite successful – that is, people are happier or better able to conduct their lives post-SRS.
There’s anecdotal evidence that amputation leads to positive outcomes for people with BIID, but no studies have yet examined the question.
The idea that identifying a condition can make it more prevalent, as they argue, makes good sense to me. I think any person who really wants a limb chopped off has every right to have that feeling, and indeed to seek to act on it. OTOH, I think any doctor who has taken the Hippocratic Oath (as they all have) should refuse point-blank to perform the surgery. First, do no harm. So you have a Catch-22.
Pet peeve: blueheron should write “phenomenon.”
What I find particularly fascinating about BIID is the increasing separation of “identity” from the corporeal…as well as the increasing acceptance of the maleablity of the body in relation to an “identity.” From piercings to tattoos to eating diorders to BIID and gender reassignment surgery the body is becomming a canvas for expression (healthy or otherwise…a detemination I will leave up to those with a claim to moral understanding).
I am drawn back to some of Foucault’s more interesting stuff about the body as an object/subject of power in our (read western) culture. I don’t have the time to flesh out the anyalysis and write a book about it but it seems an interesting avenue to persue.
Also if people with BIID go through with amputations and then use prosthetic limbs we can add a discussion of cybernetics to this intellectual blender as well (see Donna Harraway)…i.e. chosing a cybernetic lifestyle etc.
I am also curious about any gendered components to BIID…prevalance in men vs women etc.
Wow! super fascinating. Thanks for the post and getting my brain running (even before I finished my coffee!)
John- Should a doctor who has taken the Hippocratic Oath also refuse point blank to chop off the penis of a man who feels deep down that he’s really meant to be a woman, and that he won’t be happy as long as he has a penis? The point is that there are different types of harm, one of which is psychological. I don’t know anything about this disorder, but if it turns out that having legs really does make these people miserable, that may very well be a bigger harm. You’re suggesting that a doctor should routinely substitute his judgement of what is best for a patient in place of that patient’s judgement. If that were applied across the board, doctors would be in a position of making many people’s most personal decisions for them. A doctor would be morally obligated under your view to refuse a tubal ligation to a woman he thought would be “harmed” by not having more children. Doctors could withhold potentially lifesaving medicine from dying patients on the grounds that such medicine can be dangerous and have side effects, and those side effects are a harm. The point is that we can’t empower doctors to decide what’s best for people in their lives. They can, and should, counsel patients on best medical practices and likely outcomes of various courses of treatment, but the ultimate decision must be the patient’s, so long as the patient is competent to make it.
Ampersand, I have a policy about making my mind up based on someone else’s statistical analysis: I try not to except under certain very restrictive conditions, at least one of which must be present.
1 – I actually understand the field pretty well and am equipped to be critical of the study’s methods and subjects themselves.
2 – I have extensively read the research on the field, having gone out of my way to find the most partisan and critical work in the area. If, after exhausting the bibliographies, one side is clearly more convincing than the other, I will probably come to a conclusion.
3 – The study reinforces something I already feel fairly strongly about, and agrees with my previous conclusions.
4 – I have to come up with some answer, or I really want to stake out a position for some reason other than actually caring about the issue.
(Most people tell me that the first two seem like eminently good ideas, but the third suggests that I favour studies that agree with my prejudices and the fourth suggests that some of the opinions I express may be tactical. This is true. However, I’ve never met anyone who didn’t do just that. I have, however, met a lot of people who won’t admit to it.)
I don’t have a strong opinions on this topic nor do I know anyone – to the best of my knowledge – who is contemplating radical body alterations except for the purposes of treating less controvertial conditions. So, options three and four are out. And options one and two require me to do some hard work.
In principle, I agree with the idea that what people do with their bodies is largely none of my business. In practice, I have made enough exceptions to that principle that I am beginning to question if I should still hold it. I believe in mandatory vaccination, even for children and even against the will of the vaccinee. I believe that certain practices can be so destructive that people shouldn’t be allowed to even voluntarily have them, because it encourages the practioners, like female genital mutilation.
So, I suspect I’m going to stay undecided for the time being.
You may be right and I am not disagreeing with you. In fact, your position will probably tend to tilt me towards a more positive opinion of gender reassignment, because when I lack an opinion of my own I will tend to take seriously the opinions of anyone who has a strong opinion and who I usually agree with anyway.
However, it isn’t quite open and shut yet. Having carefully laid out why I haven’t come to a conclusion, hopefully communicating that I am not trying to offend anyone since I know I’m treading on sensitive ground here, let me muddy the waters a bit. I hope you will pardon me for shifting the topic a bit more towards gender reassignment before suggesting that the same thinking applies to voluntary amputation.
I have a slightly famous distant aquaintance (actually a friend of a member of my family and I think a distant relative) who was an involuntary recipient of gender reassignment shortly after birth. There was a documentary about him that is fairly well known in the social sciences and I suspect in the transgendered community. It was called “As Nature Made Him,” and it is difficult not to conclude from it that gender is less changeable than one might think.
One could well look at this and suggest that gender reassignment is a attacking a symptom of a more complex phenomenon rather than actually treating a condition. I don’t know if this is the case and I am not claiming that it is, just that it is a position that I can’t dismiss. The same could be true of BIID.
One of my favourite authors has postulated an “End of the World” button, hidden in the back of a cave with a warning sign “DO NOT TOUCH THIS END OF THE WORLD BUTTON”. He says the paint wouldn’t even have time to dry befor…
Similarly with these operations. We do it BECAUSE WE CAN and for no other reason. In the world today, we believe there are no barriers to what we want or can expect. Want to be a new sex? Fine. Double amputee? I’ll take two. As human beings, we do not stop to ask *whether* something should be done. Perhaps Philosophy should be compulsory in all schools worldwide.
JD’s initial statement
What I find particularly fascinating about BIID is the increasing separation of “identity” from the corporeal’
puts this in perspective for me to some degree. I’ve long noted what looks to me like an actual distaste for physicality in western culture. Maybe it’s too much science fiction on my part, but it seems folks believe evolutionary improvement involves less body and more mind. The whole Start Trek thing, puny bodies under huge heads, evolving into a giant floating glowing brain that eventually turns to pure energy… sarcasticly stated but I think truly reflective of the idea of identity as essence that lives in a fleshy case that can (and possibly should) be shed.
Whew.
On the specific topic, though, every difference in degree can be escalated until it becomes a difference in kind. If SRS made a person less functional as a member of society (which is the only place I have an investment in the outcome of such stuff) I’d object to it. Since I’ve seen for myself that SRS can resolve whatever issues the person has that makes them seek or need it, I don’t object as long as counselling, etc. continues to come first.
Now that we’re reworking thngs to make life more livable for the disabled, there’s actually little additional cost to society in allowing voluntary amputation.
Yet voluntary amputation makes a person less physically capable in addition, I suspect, to playing into, rather than resolving, some nasty control and/or dependancy issues. So I just can’t get with it.
Transsexuality is an attempt to conform to society’s expectations, and thus very unlike this amputation business.
It would be helpful if we could figure out how much the desire for amputation is connected to sexual fetishizing.
I’ve had experiences where I was curious about what it would feel like to do something that would hurt me. I would be in my father’s workshop and wonder what it would feel like to cut off my finger. Sometimes the feeling would be so strong that I would have to leave the shop before I actually attempted to try it.
This all comes down to the question of whether we should do something just because we feel like it’s something we want to do. In the case of gender-identity, I think it’s probably a good thing, as it doesn’t render one unable to work, for example or function in society. Obviously, there are still problems, like employers who won’t hire you or people who think you’re a freak, but if those things were set aside, a transexual is a fully functioning human being.
But removing limbs seems to go a step beyond. These people are disabling themselves. What can a double arm amputee do for a job? I mean, as a person who is disabled (although only marginally – I have a prosthetic hip) through no fault of my own I find it a little offensive that someone would choose to put themselves in that situation, and that there are doctors who are willing to perform the surgery for them.
What would happen if the person with BIID was unable to have the surgery performed – would they be unable to function, or would they just have a feeling that their body wasn’t the way they imagined it.
*Sigh* – I can see both sides of the argument, but my gut tells me it’s insane to cut off your own limbs.
How does the woman who desires to cut off both arms intend to make a living afterward (I almost said “support herself,” but that sounded too much like a bad pun)? Will she seek public assistance? Presumably the Americans with Disabilities Act would apply to her, but many employers just might not be able to offer any reasonable accommodations to a person with no arms.
I think society may have some legitimate interest in denying a medically unnecessary (although I understand that the sufferer may consider it to be psychologically necessary) procedure that would leave the patient a public charge. That issue would not pose an obstacle, by contrast, to gender-reassignment surgery.
I hadn’t heard about this condition until I read about it in, of all things, a film review a few months back.
Unfortunately, BIID is something that I haven’t quite made my mind up about, yet. The principle argument here revolves around how much should be done to accurately reflect in a corporeal sense one’s mental image of one’s self. Should a person be allowed to change his or her gender because he or she honestly believes that his or her present gender is not the gender that he or she ought to be and because he or she doesn’t view his- or herself as a man or woman?* Should one be able to have one’s limbs removed in order to match a view of one’s self as an amputee? Should one be allowed to have one’s excess fat surgically removed in order to match a view of one’s self as being slimmer? Should a woman be allowed to have her breasts enlarged or diminished because she views herself with larger or smaller breasts?
I’ll not answer that question just yet as I haven’t made even a preliminary decision on the subject. However, I’ll comment a bit about BIID right now (and probably return to the above question in a later comment either today or tomorrow).
I agree with bean that people should undergo psychological counseling before being allowed to have a voluntary amputation performed. I also think, though, that the people who would be helping to care for the newly made amputee should be involved in the psychological assessment. All of the cases I’ve read about BIID have suggested to me a codependent relationship (although I should be clear: I’m not a mental health professional. Everything I know about codependency I learned from my parents). Obviously, perpetuating an unhealthy relationship through a surgical procedure is not a great idea. I think the determination of a codependent relationship would have to be something that’s determined by a mental health professional after interviews with the potential amputee and his or her caretakers.
On a somewhat more speculative note, I’ve wondered for awhile if there is a correlation between the increase in cases of BIID in the past few decades and the increased acceptance of disabled persons. Could it be that some people who develop BIID perceive the handicapped as something of a privileged minority and so on a subconscious level decide that they want to be a part of that minority? Just a thought.
* Staying grammatically correct in that sentence made it a mouthful of a dizzy. Woo. Once I got started with the “he or she” business there was no going back.
Subjectively, I am horrified by the idea of someone choosing to be crippled; but I realize other people are just as horrified by the idea of someone choosing to change sex. My horror is my own problem, not the problem of someone with BIID.
Do you really think that? Say someone is so depressed she wants to commit suicide. Most people would say that she is the one who has a problem and needs help of some sort. By your logic, the suicidally depressed person has no problem at all; it’s the rest of us who have the “problem” of not accepting her choice of what to do with her body.
Again, do you really think this way? Why? Is it that the invocation of the words “his or her own body” magically makes everything ok? Is it impossible for people to be insane or mentally disturbed in some way that affects what they want to do with their own body?
was going to make a post in line with Tom’s — that somebody’s “right” to self-mutilation should end with their ability to support themselves afterward. saying “I need to be quadrapalegic to be me” is rather different if you expect the world to bathe and feed you from then on…
am also intrigued by the analogy with suicide. there is a certain illogic to strictures against suicide, as such an act does not objectively do harm to any others (emotional distress aside), and yet we as a society try hard to prevent suicide. is that based on the frequent observation that suicide is often a “cry for help” (from somebody who would actually like to be stopped), or from some deeper sense that there is a line between reasonable and unreasonable choices about one’s person? if it’s difficult to answer that question for suicide, then how much more difficult for amputation!
Suicide strikes me as a slightly different issue. The suicidal person is presumably thinking, “I want to do something to my body to end my life,” while the BIID sufferer is thinking, “I want to do something to my body that I believe will improve my life.” I think those present different philosophical questions, and they probably present different brain chemistries as well.
Certainly, there are people who believe in an individual right to unhindered or even assisted suicide, at least in some cases (terminal patients, for instance), but I don’t think that one logically has to accept the notion of autonomy to commit suicide just because one accepts the assertion of autonomy to seek voluntary amputation. Conversely, I think one can support certain forms of assisted suicide without necessarily supporting voluntary amputation.
What is the world coming to when people would not deny others to chop their own limbs off to make themselves feel better?
There is no doubt that they are harming themselves, and yet so many people seem willing to say “they have a right to do as they wish to themselves”. Why should one be allowed to harm oneself?
I see the line between mental illness and “lifestyle choice” being blurred like crazy, until the former is completely taken over by the latter.
Yes — cutting oneself, pulling ones hair out, starving oneself, or otherwise mutilating oneself are seen, with relatively little controversy, as deviant behaviors arising from psychological disorders — it seems to me an obsessive fixation on cutting off a piece of ones body is no different — although actually carrying this obsession out requires medical intervention. And, what happens to someone who decides after the surgery that it was not such a good idea? They are in for a run of bad luck.
I’m waiting, waiting patiently but hopefully, for the advent of species reassignment surgery so that I can live out my days happy as a dog.
I just cannot see how someone is considered sane who wants to chop off a limb. Or gouge out their own eyes, or cut out their own tongue, have a lobotomy, or install a colostomy bag for no reason. They are obviously in need of psychological counseling, just as much as the guy who hears voices or wears a tinfoil hat.
Gender reassignment surgery is another thing altogether, closer to very extensive cosmetic surgery…you can presumably still physically function. You are changing your sex, not your ability to take care of yourself.
What do the newly-amputated expect they will do for the rest of their lives? As others have asked, who will care for them? Because someone will have to, at least minimally. Perhaps that is part of their psychological issues, a desire to be cared for and pitied. I really don’t know.
In this instance I’m going with my gut. Any doctor who performs this surgery is violating, not upholding, their oath to do no harm. Doctors are not obligated to carry out the wishes of the mentally ill.
In a very cold way, I would also say if you want to cut off your arm, then do it yourself. Society and the medical profession doesn’t owe you that indulgence.
Presumably, if this desire had existed throughout history, those who wanted it bad enough would’ve done just that. Since that doesn’t seem to be the case, I’d suspect this is a meme that those unfortunate enough to have mental issues have picked up on. They deserve our compassion, and allowing them to incapacitate themselves is the opposite of compassion.
I think the comparison between SRS (which good lefties tend to support) and voluntary amputation needs a little spice. So, what about anorexia? I have a close relative who’s anorexic. She wants to be thinner: she knows it’s not healthy, but it’s what she wants. Her parents have used a number of tactics, from threats to encouragement to (once) hospitalization, to get her to eat enough to stay at a healthy weight. I’m fine with this, more or less, because she has a mental illness which gives her a compulsion to modify her body unhealthily, in a way that’s much *less* drastic than surgery.
On the other hand, if she felt that she wanted to live as a man, I would most likely try to convince her parents that she should, if it’s possible, have access to the relevant surgeries (after, of course, lots and lots of supportive counseling).
This is what it comes down to: I think of gender as fairly fluid, as not necessarily determined by body, and *not* as a moral choice. (Also, I would fight for my relative’s ability to present herself as male without surgery if she so desired.) So if my relative wants to change her gender, she’s not actually harming herself, she’s just moving among equally valid states. When she announces a desire to starve herself, she’s trying to move from a good state (good health) to a bad one (ill health). I’d say the same thing about voluntary amputation.
The problem is that this is all based on little more than my own beliefs about what’s good and bad. I have some ideas about it (i.e. gender is fluid and no gender is better than any other, but it’s better not to be disabled if you can avoid it) but that’s all. And, since I don’t think disabilities necessarily make people miserable, it doesn’t even hold up that well unless I bring in stuff about how it’s insulting to someone else’s identity, which is not really my place to do.
In the end, this is just me belieiving in good and bad and thinking that eating healthy amounts of food, having all your limbs, and presenting the world with the gender you feel yourself to be are all good things, and that mutilating yourself, whatever that means, is bad. This is a kind of faith. The details can change, but the distinction always exists. I don’t really understand activists who don’t have something like it.
Would circumcision of one’s child amount to apotemnophilia by proxy?
Good comments by both Laurel and Tom T. – and going along with Tom’s comment – how did people decide circumcising boys was a Good Thing to Do? (Not having a foreskin hasn’t harmed me one bit, especially compared to not having a leg or arm, but I don’t see the point of circumcision.)
There also were threads on other boards a while back about perpetuating hereditary disabilities, particularly deafness – I viewed the desire for two deaf parents to produce a deaf child (as opposed to a hearing child) as monstrous.
As for medical help, I’ll agree with others who say that doctors who amputate healthy limbs are violating the Hippocratic oath; would any doctor intentionally indulge Munchausen’s Syndrome sufferers or hypochondriacs in going through unnecessary medical treatment, or perform surgery on cutters?
side note on social construction of illness, especially mental illness: a psychology major friend told me that schizophrenia in the US and Sri Lanka are totally different. In the US, people manifest certain symptoms of schizophrenia and then have to treat it for the rest of their lives, and it’s as close to being something biological as mental illness can be; in Sri Lanka, people manifest the same symptoms, but it’s called demonic possession (or something like that) and once someone exorcises them they’re cured and never have symptoms again, and schizophrenia as we describe it is unknown.
If I’m wrong about this or if you have more details than I do, let me know. meanwhile, I think this points to an awesomely complicated mind-body-society interface.
I don’t really know where to start. It’s Onionesque or Pythonesque. I haven’t got the least idea what to say to to someone whose dream in life is to be a quadruple amputee.
I just get a feeling of hopelessness when I realize that a significant part of the left thinks that this is a really interesting and important question. It sounds like a really idiotic game of “Well, top this!”. I suppose that the next quadruple amputee will insist that the operation be done with neolithic stone tools and without anesthesias.
Hi Zizka, don’t get hopeless! I think “a significant part of the left thinks this is a really interesting and important question” is way way overstating things. More like, “A couple of people in a blog comments section thought it would be a fun comparison to bat around…”
I think at some stage a fetus is pre-sex, that some are born with indistinct sex organs and the doctors perform a choice. I believe that fairly early the fetus is amphibious appearing, but quickly has four limbs, which morph about but not in the ways described by the amputees (ie, having some part of a limb terminating somewhere), and that no births with ambiguous limbs/missing flesh is ever overruled by a doctor into forming limbs over allowing the missing flesh to continue. The above would be a necessary component for me to believe in any parallelism at all. Short of that, I’d have to resist any comparing of the two.
This would be quite a good discussion to mail to anyone thinking about doing this (if they found a doctor), including zizka’s comment. I liked Laurel’s too.
Okay.
Two options for somebody who feels they want to live without arms:
1) change their body
2) change their mind
What’s wrong with going for option 2?
As you know Ampersand-Bob, self mutilation and such are danger signals when assesing somebody’s mental health. I’d say wanting to undergo amputation is more than a warning signal.
Transsexuality is a red herring here. Undergoing a sex change doesn’t turn you into a cripple. It leaves you with a healthy, functional body.
Yes, people with disabilities can and do live fulfilling lives. That doesn’t mean we should create them deliberately.
Popular neuroscience books (like Sacks’ The man who mistook his wife for a hat” & so on) discuss cases where people – stroke victims, if my memory serves me right – literally feel that a limb does not belong to them (doctor, there’s somebody else’s leg in my bed!), or appear to lose consciousness of large portions of their body (ie, drawing self-portraits that simply do not take account of their right side). I wonder if BIID might be somehow related to this sort of thing?
Dan – I had wondered about that myself. There’s a neuropsychological disorder (whose name I cannot remember for the life of me) that involves patients being unable to voluntarily move a part of their body (e.g., complain that their legs don’t work before getting up and walking out of the doctor’s office). I was curious about whether or not a similar neuropsychological disorder was manifesting itself in patients with BIID.
However, I think that there’s some validity to the question of whether or not the phenomenon of BIID is something particular to our time period. For instance, there are examples of odd behaviour (prosopagnosia, for instance, whereby afflicted persons are unable to recognize people by their faces which can lead to them speaking to inanimate objects that they have mistaken as people, or mistaking people for inanimate objects (this is the source for Sack’s infamous title)) that have been documented throughout history. While some of these maladies may have been lumped under “daemonic possession” or “madness,” there is little doubt that they have all been around for as long as humans have. To my knowledge, there are not instances of BIID in historical literature of any kind, which suggests that the disorder may be a new thing.
I think this discussion is driven by extremely normative ideas of bodies, human value and productivity. These normative conceptions of the human body are, in part, responsible for anorexia and bulemia (sp?). Is this another socially constructed “condition” that we are more comfortable pathologizing than trying to understand (a la schizophrenia).
Certain forms of physical modification (piercing, tattoos, scarification, etc) are on some level socially acceptable but amputation is not. I think it might be more interesting to explore the boundary between those two-types of body modification in our (western) cluture than it is to discuss individuals psychological health based on somewhat nebulous social norms such as productivity.
Yes — cutting oneself, pulling ones hair out, starving oneself, or otherwise mutilating oneself are seen, with relatively little controversy, as deviant behaviors arising from psychological disorders — it seems to me an obsessive fixation on cutting off a piece of ones body is no different — although actually carrying this obsession out requires medical intervention.
Hear hear. I completely agree with this and with Martin Wisse’s response. I know it’s all a matter of degree – many folks consider tattoos, body piercings, even bad haircuts to be self-mutilation too. But those of us who have OCDs (and so far I’m the only one who’s “come out” on this thread and admitted that) and can’t help ourselves tend not to take kindly to those people who choose to mutilate. I’m astute enough to recognize that my OCD isn’t normal and shouldn’t be acceptable or encouraged; why the hell aren’t they? No friggin’ excuse, no PC (in the original sense of the term) tolerance for different desires here, okay? You wanna deliberately cripple yourself, you need medical help, period. Sheesh, I can’t believe there are people here who would even entertain the idea of “do what thou wilt” in this instance. (As a P.S., when Aron Ralston cut off his arm in Utah earlier this year, as I recall a few people speculated as to whether he had BIID. Most were, obviously, not mainstream news voices.)
I take the David Barrett/Zizka view of this, and don’t have anything to add to their succinct outrage. But I do want to single out this throwaway comment from acm:
“…there is a certain illogic to strictures against suicide, as such an act does not objectively do harm to any others (emotional distress aside)…”
This use of “objectively,” and the dismissal implied in the parenthetical “emotional distress aside,” sum up to me a great deal of what is wrong with Western culture today. I’m hoping acm is young and has never had anyone close to him or her die, but plenty of people seem to be able to maintain this attitude despite personal experience. The idea seems to be that “physical” pain from a visible cause is real and important, whereas grief is some sort of epiphenomenon, not to be taken seriously. And maybe there’s a connection here; maybe these people who want to chop off limbs are trying to deal with internal pain (in their mind, heart, psyche, soul, pick a locus according to your worldview) but feel they have to physicalize it to be taken seriously, to take themselves seriously. I was struck by Laurel’s comparison of schizophrenia here and in Sri Lanka, and wonder if these “BIID” sufferers would be better off for a little exorcism.
Larry Lurex wrote:
Similarly with these operations. We do it BECAUSE WE CAN and for no other reason. In the world today, we believe there are no barriers to what we want or can expect. Want to be a new sex? Fine. Double amputee? I’ll take two. As human beings, we do not stop to ask *whether* something should be done. Perhaps Philosophy should be compulsory in all schools worldwide.
My question is what’s wrong with that attitude? If we can do something and a person really understands and wishes to have it done (which is a good reason for both a moderate waiting period and careful explanations), then why not do it? The only reasons I can see against allowing such choices is susperstitious nonsense about the sanctity of the human form or similar foolish arguments based on outmooded ideologies rigid belief systems. In the Victorian era, people used to make similarly foolish arguments against filling teeth or using anesthesia in childbirth. For me, the botom line is allowing people to make the decisions and from there the lives that they wish to live.
Supporting everyone’s quest to become whatever they wish, be that a doctor, an artist, another gender, an amputee, or someone whose body is covered in tattoos seems to be the goal of any society that makes the happiness of its members a core value. Enforced conformity and restriction of personal choices (as long as those choices do not harm others) are not policies that should be tolerated by a just and humane society.
Blueheron:
If they want to amputate a limb or two and can find a surgeon to do it, go for it. But don’t expect me to hold the door for them. As I said above, a difference in degree reaches a point where it become a difference in kind, and it makes no sense to treat ice the same way as cold water.
My ethics are based in biology, not philosophy, law or politics. Such a decision runs counter to the nature of life.
I will not obstruct. Neither will I assist in any way. That’s what my ethics call for.
Going way back to Amy Phillips’ comment: “You’re suggesting that a doctor should routinely substitute his judgement of what is best for a patient in place of that patient’s judgement.”
Darn right he should substitute his own judgment, if the patient is asking him to do something outright harmful. “First, do no harm” is a pretty basic part of being a doctor.
“A doctor would be morally obligated under your view to refuse a tubal ligation to a woman he thought would be “harmed” by not having more children. Doctors could withhold potentially lifesaving medicine from dying patients on the grounds that such medicine can be dangerous and have side effects, and those side effects are a harm.”
Yes, they could. And you have a safeguard against that; it’s called a second opinion. (I suppose in the case of genuinely livesaving medicine, there’s also the threat of a malpractice suit.)
No one has the right to make a doctor perform an operation he or she considers harmful to the patient, but any doctor with a belief like “tubal ligation should never be done” will find patients going elsewhere.
Patients have a right to turn down unreasonable interventions by doctors, but they sure don’t have a right to demand that doctors cripple them.
Here’s my take on this from the perspective of someone who is a medical person (a nurse):
Proclamations such as “do no harm” or “respect the patient’s right to decide” only get one so far in medicine. From a concrete perspective, medical ethics are mostly decided on the basis of cost/risk analysis.
In medicine we often risk harming the body for the benefit of the psyche, and this is not seen as a contradiction of the principal that one must “do no harm”. Hence, conjoined twins are seperated because the psychological benefits outweigh the sometimes grave physical risks. Terminally ill patients routinely get life-threatening doses of pain-killers. Depressed patients got electroshock even before we worked out a way to prevent the common side effect of broken bones that electroshock once, but no longer, carried.
Likewise, we routinely decide what treatments to offer our patients and which not even to mention based on risk/benefit analyses. A breast cancer patient may be offered lumpectomy, mastectomy, or chemo, but not removal of her left big toe, because there’s no benefit to the last. Likewise, we generally will not offer a treatment we think is too dangerous (unless the potential benefit is huge– see above). Yes, this is paternalistic, but we have to be able to sleep at night.
So when I first read these posts, my thought was: no way should amputation be done on these folks. Grand principles aside, my reasoning was that besides all the normal risks of surgery (which are not negligible) there were two huge risks that rule out amputation– 1) the patient might desperately want his/her limb back later, and obviously there’s no going back, and 2) phantom pain; a very common side effect of amputation in which the patient feels as if the missing limb is still present, and it hurts A LOT. Imagine, post amputation, believing your limb does not belong on your body, and still feeling as if its there, but you don’t want it, and now it hurts all the time too.
So for me, case closed….
But then I read the original article in the Atlantic that the posts referred to, and found out that people with dysmorphic body image will sometimes cut off their limbs themselves if no one will amputate. Now the risk/benefit analysis looks completely different. From a medical perspective, this subgroup of people have a potentially fatal condition. Medical amputation is vastly preferable to self-amputation, risk/benefit-wise.
So, all-in-all, my opinion now is that, as in many other things, one must decide individual cases on a case by case basis. What are the risks in each case? What are the potential benefits to each patient?
There does seem to be some confusion between BIID and transsexuality. In male-to-female surgery, the weenie is not cut off–the male tissues are re-arranged to be in the proper places for a female, including the skin (inner labia and vaginal lining) and glans (it becomes the clitoris). The testis are removed, yes, but they are harmful to someone living as a female because of the masculinization of testosterone. The scrotum is used for outer labia and vaginal lining.
Male-to-female transsexuals have a female gender identity, live as a woman, and due to hormones, etc., look like a woman. Denying them genital surgery just because you don’t think that people should have such surgeries means that you wish that they have legal troubles, medical troubles when a doctor needs to do an examination, get harassed or even killed because of their genital status (think of Gwen Araujo), and never be allowed to marry or make love.
When we (yes, I have had this surgery) pursue sex reassignment surgery, we do not do this out of a fetish, but as a need for an improved and normal life.
Please do not list transsexuality anywhere near BIID.
My husband, in perfect mental health when he severed his very own thumb, went berserk when I, searching for a Dr. to reattatch his thumb, consulted the yellow pages. Maybe it was the way I said, “I wonder which clinic is cheapest . . . “
Amy Phillips, what you said about treatment being ultimately down to the patient (as long as they are of soud mind) is absolutely true. I agree 100% with you on that one :D
Image and reality, polar opposites in the twisted consciousness of narcissism. Reality is what you are, and those happiest not only accept it but thrive within the limitations.
On the other hand, image discordant with reality is born of self-loathing, programmed into a child by parents who refused to love him (or her) as he was. Because a child is dependent on his parents for survival, he feels terror and shame at their possible abandonment due to what he misperceives as his own “badness.” To make himself lovable, he imprisons his “true self” deep within, forever forbidden to speak, and from then on wears the mask of a “false-self”–a lie to himself and the world. But a mask can’t feel love. That self-alienation is the real source of his pain. His insatiable need for attention, validation of his mask, is only a pain-killer of temporary effect.
To imagine that self-loathing will pass with the attention-getting amputation of a scapegoated body part, into which all one’s “badness” is projected, thereby purifying one’s ego, is immature “black and white” thinking taken to the level of mania. Any doctor who complies with the patient’s self-delusions by performing unnecessary surgery–“first, do no harm”–proves he was asleep during his psychology seminar.
Correct me if I’m wrong, because most of my knowledge on this subject comes from reading Silence of the Lambs, but aren’t people seeking SRS subjected to pretty intensive screening and required to adopt the identity prior to surgery to ensure that they’re good candidates? And aren’t they required to undergo extensive counseling to determine whether they’re exhibiting any mental illness?
Let me say this: It is easy to decide what someone else should or should not be able to do with their life when you don’t have to live that life. While I am just as horrified by the idea of a young woman having her arms amputated as everyone else, when I decide that we should say “no” to her, I get to walk away and not think about it anymore. She is the one who is now forced to live life according to my standards, ethics, and morality instead of her own. She is the one who continues to suffer because I haved decided what is best for her.
Suicide is no different. I have chronic clinical depression and have tried to kill myself on a number of occasions. I have been saved by people who supposedly care about me. But they really care about themselves more than me, because, after they have done their deed as a good samaritan and prevented themselves from experiencing the grief of my passing, they get to walk away feeling great about themselves.
I am the one who has to continue to live a life made unbearable by my depression, not them. While I am not actively suicidal right now, I do wish, every single day, that I was dead, that I had killed myself already. When I am lying on the floor in the middle of the night overwhelmed with sadness and grief, they aren’t there with me. They don’t experience it. I am the only one who gets to experience the true consequences of someone else deciding what is and isn’t good for me.
Now, I know quite a bit about neuroscience and psychiatry, for various reasons, though I am not a doctor. I strongly suspect that BIID is actually a close relative to phantom-limb syndrome and not just some crazy meme in the air. In phantom-limb syndrome, the brain has difficulty interpreting the lack of feedback from the lost limb.
You see, though we aren’t aware of it, the brain has a body map within it, created by neural connections, that helps it to manage its “assets,” if you will. In phantom limb syndrome, the brain still has a body map including the lost limb and fails to update itself to match the physical state of affairs. and begins interpreting the lack of signal as pain. The brain fails to adjust to the fact that the limb is not going to respond to it. But, in a novel therapy now being used, when an amputee puts their other limb (hand, whatever) in a mirrored box and looks at the reflection, which, when flipped, now looks like the lost limb, and flexes it, the brain believes that the lost limb has been flexed and the pain diminishes. The brain accepts feedback from the eyes that the limb is working as if it were direct feedback from the limb.
In the case of BIID, I suspect something similar is happening. I suspect that BIID has something to do with the brain failing to correctly account for some limbs in its body map. So, the limbs may function, but the part of the brain that tells you, “You have two arms and two legs” fails to include some of those limbs. The body map connects to emotional centers in the brain. If the body map does not include certain limbs, then the emotional centers will not be activated to have an emotional (“I own this limb”) response to that limb and it therefore seems alien to the person.
I think that a lot of people underestimate the myriad of ways in which the brain can malfunction. The brain is an organ, like any other, and can malfunction in some pretty amazing ways. The unity of mind, body, and self that most of us experience is created by a lot of processes in the brain that we aren’t aware of, and therefore don’t realize are happening.
So, when this malfunctions in someone else’s brain, it’s hard to understand, because we don’t recognize all the things that have to seamlessly for us to experience the world as we do. It would be kind of like if you went to see movies without knowing they were really just a fast-moving strip of still pictures. It seems like the action on the screen is happening seamlessly, like in life, rather than simply being composed of thousands of images that all have to be in the right place for the illusion to be created. The brain is kind of like that.
A person with BIID who desires amputation should be required to go through any and all psychotherapeutic and psychiatric treatments for his or her condition available. If new treatments are expected to be available soon, the patient should be made aware of them before they elect surgery.
But, at a certain point, if medical science cannot offer the sufferer any other cure, the question becomes whether or not we have a right to decree that someone else suffer because we perceive greater harm in the cure than the malady. We aren’t the ones who have to live with the suffering that those with BIID do. Because of the seamless illusion of bodily integrity created by the body map in our brains, it is impossible to truly understand what it is like if the illusion fails and your brain insists that there are foreign objects inappropriately attached to your body. It is easy to consign someone to such a life when we have no idea how terrible it is, but it isn’t as easy to be the one who has to live with that decision.
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This subject was actually just covered on Nip/Tuck in which a man pleaded with the plastic surgeons to amputate him. This guy was willing to pay any price to get rid of his leg he even tied his leg and walked with crutches. The man even went as far as to shoot his leg in hopes it would have to be amputated. This a strange and interesting disorder.
I say fine, but don’t let them qualify under the Americans with Disabilities Act later.
If this young woman with her arms removed finds she can’t get a job, the workplace shouldn’t be forced to give her special treatment so she can do the job without arms. It was her choice, and she should face the consequences.
mooglar Writes:
You see, though we aren’t aware of it, the brain has a body map within it, created by neural connections, that helps it to manage its “assets,” if you will. In phantom limb syndrome, the brain still has a body map including the lost limb and fails to update itself to match the physical state of affairs. and begins interpreting the lack of signal as pain. The brain fails to adjust to the fact that the limb is not going to respond to it. But, in a novel therapy now being used, when an amputee puts their other limb (hand, whatever) in a mirrored box and looks at the reflection, which, when flipped, now looks like the lost limb, and flexes it, the brain believes that the lost limb has been flexed and the pain diminishes. The brain accepts feedback from the eyes that the limb is working as if it were direct feedback from the limb.
In the case of BIID, I suspect something similar is happening. I suspect that BIID has something to do with the brain failing to correctly account for some limbs in its body map. So, the limbs may function, but the part of the brain that tells you, “You have two arms and two legs” fails to include some of those limbs. The body map connects to emotional centers in the brain. If the body map does not include certain limbs, then the emotional centers will not be activated to have an emotional (“I own this limb”) response to that limb and it therefore seems alien to the person.
mooglar, I hope you can find the solution for your depression, (as I have done) so you can at least be around long enough to write a few books…
You may not be a doctor, but you should be writing books that doctors are required to read.
I’m curious to know if any studies involving Kirlian photography have been done that relate to this disorder. Something similar has been done with plants. Leaves and other plant structures, when photographed using Kirlian methods, having sections removed, still record the full, uncut plant upon the film. Not speculating upon the source of the energy recorded, the physical evidence is that some degree of “awareness” exists for the “limb” that is no longer there. There is no reason to deny that the possibility of a reversal of the condition. To offer a hypothesis: If one with BIID were to be photographed by Kirlian methods, would the image be missing in the location of the “alien” limb?…
What strikes me as most depressing about this discussion is the fact that so many people feel they have the right to make moral judgements about the lives of others without ever having LISTENED to what those others might have to say. Rather than reproducing dangerous and offensive stereotypes (for example, of wannabes as people who desire to become quadruple amputees) why not find out whether such representations are accurate, and if they aren’t (and based on my research they definitely are not) then it might be worth doing a bit of soul searching about what it is that leads one to make generalisations that are disrespectful and ultimately dangerous. If we all reject outrightly everything we don’t personally understand and/or experieince, then what kind of world will we find ourselves living in? Rather than making pronouncements about BIID or about transgender issues, my ethical responsibility is to listen to and respect those whose lives are intimately effected by these things. In doing so, we all might learn something.
As a transsexual, I would like to post my feelings on this matter. Firstly, transsexualism is not just about the operation, in fact some transsexuals never have surgery – hormones do most of the alteration. Also, transsexualism is not about necessarily “becoming” a woman or man, that person is already a woman or man before transitioning, and simply changes the body to match their inner identity, but is not necessarily simple as conforming to what they feel is “better” or “more ideal” for them, but allowing them to realises themselves and their innate gender identity, irrespective of general personality. While their bodies are not physically completely male or female, this is not the object of the transsexual, but is to achieve peace to match their inner self with the outer self and the role they play in society. Also, would a castrated man or a woman with hysterectomy be no longer considered to be their birth sex? Gender is far more than reproductive organs. However, as cisgendered people cannot understand the feeling of transsexuals, I cannot understand the need for arm amputation, and I cannot see any possible positive effects, yet the search for inner identity seems similar, so if it causes significant, life threatening distress (as it can with transsexuals), then perhaps treatment is the only solution.
The difference between transsexualism and biid is that transsexuals can still function, post-surgery, in society just as well as they could before. Being a man, or being a woman, isn’t a disability–lacking a limb is. (One may hold differing opinions about whether society should structure itself to allow those missing limbs to participate more fully, but it’s unquestionable that lacking a limb prevents you from doing many things).
Being dissatisfied with your body and wanting to change it so you’re satisfied isn’t a mental illness. Wanting to injure or disable yourself, or kill yourself, is.
(Full disclosure: At some point in the past I was suicidal, and damn right I was mentally ill back then, rather than making a choice about my own body).
I think its important to find out if any treatments effectively change the minds of people with this problem before we run around advocating amputation as the best possible treatment. I liked the comparison with suicide, though disability is obviously not the same thing as death. Its just that suicide DOES effectively treat depression. And maybe for some people it is the only thing that does. But that doesnt mean that the medical establishment or society in general condones suicide as a first-line treatment for sucidial depression.
I hope somebody is doing drug trials or something; if they found something effective, the internet would be a great way of publicizing it to people that are currently not seeking mental health treatment. Why woudl people seek such a thing if they are facing humliation and there is no known treatment for the disorder?
I have wanted to be paralyzed for the most of my life . I grew up in a family where my father was physiaclly violent toward me .I began to pretend making fake leg braces when I was 9 years old..this was inspired from seeing a boy in my school who had polio and had hkafo braces up to his chest. It seemed like everyone gave this polio boy a lot of attention ,and soon I began to daydream about how lucky he was !
I didn’t see the suffering aspect of having polio or being in leg braces .I only saw the fact people treated him very kindly.
My fathers violence caused me many problems..eventually my school work began to suffer ,my parents locked me up in my room after school for the next few years until I was 13 or so..thinking it would make my school work improve ?
While I was supposed to be studying ..Instead I went into my leg brace dream world .I tried strapping my legs back with my fathers leather belts .I finally found the greatest thrill from strapping myself up in my wooden braces ..wishing I had polio .
I would masturbate until I was completly ‘free’ of this life ! Often wishing to kill myself and to escape my parents ..the brace desires got more intense .
If my sexuality hadn’t gotten connected to leg braces all this would have gone away ? When I got home after school it became a sexual need to wear leg braces..I look back and see being locked away in my room made this desire a daily need as it was my secret escape from reality of a denied childhood ?
When I was a teenager -I saw a girl in high school in leg braces slowly going up a flight of stairs..watching her lift her heavly braced legs up the stairs revealed her braces ..and watching her taking each step made me very sexualy excited !
So by the time I was 15 ..seeing women in legs braces became a sexcual obcession .I mean it wasn’t like I was going to do anything wierd..All I wanted was to get to know wthe girl . It was a big taboo to be attarcted to a cripple in those days ..my mother used to tell me never to be involved with a cripple ?
Wierd..but true !
How terrible it would be for my parents if the girl I liked was crippled by polio !
When I was 17 I finally left my family ..and wearing ‘fake’ leg braces was put on hold as this obcession seemed to make survival very difficult . I then began dating normal women and having a real girlfriend made me forget most of my strong needs to be crippled.
My need to wear braces waxed and waned for many years..until ?
When I was in my 40’s I saw a web sight full of leg brace pictures at the local library ! I began to go there often to look at brace pictures ..and after a few years all I could think about was getting some leg braces for myself ..to satisfy my secret sexual needs to be crippled .
Everything revolved around the need to wear real leg braces . I must say I also lead a fairly normal hetro-sexual life as well ..I liked women who were not crippled and was married a few times.
I eventually bought a pair of kafos then hakfos ..and have been using leg braces regularly these past 5 years .It was such a big relief that I finally got myself a real set of braces.
Its caused some problems ..but its a lot better wearing braces for real then fantazing all the time over some pictures .
Realizing that many people in society would condenm such a action ..I live my life as a cripple in secret.
In my ‘coming out’this has finally given my need to wear braces some validity and being seen in public wearing real braces no longer is a problem for me its normal for me..to be crippled .
There were times I wish I was paralyzed as all this ‘pretending wasn’t enough ..
I wanted to stab myself in the spine ? I have read in other web sights how some individuals end up wanting to kill themselves ..because they can’t be paralyzed .
Wanting to be paralyzed is as much a form of BIID as not wanting your legs !
Since I have started to wear leg braces..my BIID urges to paralyze myself have been reduced .
Yet for other’s ..needing being paralyzed is a life and death struggle..
It would be great individuals could get medical help ..I think you have to draw the line that the individual in question must not become a welfare case . What about the femeral nerve ..cut this and your legs are paralyzed without all the problems of paralysis from spinal damage ?
BIId ..is a mental condition that one can not change ..its just like people who want a sex change operation ..you get it from birth so why not allow BIID suffers to get the same medical help as transexuals can now have ,and be accepted as gays now are ?
I’m only a teen, but I’ve never wanted my right leg below the knee. I don’t think people should do anything to their body that is permanent, on their fave, or will decrease chances in later success (in anything). I’ve decided to wait a few years until I’m out of highschool, out of college, and hopefully teaching music. If I still want it gone, I will go over ALL the pros and cons, weigh them out, and make my decision. I might see a psychologist or some other specialist to possibly decrease this urge. I often have dreams that I don’t have that part of my limb, I can feel the stub, I can move it around using my knee. I’ve been having that reoccurring dream for years. Body modification makes people feel more comfortable in their skin, literally. Of its getting your ears pierced or cutting off a limb, people should be able to do what they want to their own body as long as they thoroughly thought of the consequences, may they be positive or negative.
Studies show that 100% of the people who have gotten their limb(s) removed have not regretted it. I don’t think that any human being has the right to criticize someone’s cosmetic decisions. If they enjoy it, good for them. If not, at least they went out and took a chance; that’s more than I can say of any of you guys who are all against it.
Body mods are becoming my socially accepted, especially considering that the younger generations are getting into this kind of stuff (ie tattoos, gauges, piercings, etc). Maybe in 30 years, you’ll see little DIY amputatiob kits sold at CVS. Only time may tell, but I am speeding the process by being an acceptalung person(: