Amputation as a treatment for BIID

[joolz]

I have Body Integrity Identity Disorder. I have been involved in BIID advocacy for nearly 15 years now.

It is correct that there is very little "evidence" that surgery is a success. There haven't been enough studies to formally examine the success (or lack thereof) of surgery for BIID.

However, I personally know about 36 individuals who have had surgery for their BIID. None of them regret it. They all say that since their surgery, they aren't experiencing the disabling distress caused by BIID.

For what it's worth, BIID also expresses itself by a need to be paralysed, or blind, or deaf, depending on the person. Please refer to the latest paper by Dr. Michael First for further information on this.

Interesting, thanks for posting, and welcome to JREF.

Do people who go for surgery (as opposed to self inflicted amputations) get counselling beforehand to ensure that amputation is the only solution and that there is no other cause for their BIID?

 

[Sledge]

As it is technologically impossible at present to restore the "map", it may well be that amputation is the only route to restore the person's feeling of integrity.
However, the loss of a functional limb is pretty extreme...

A tough call.

I feel the same about the loss of a functional penis, and yet have no problem with surgery for transgendered people.

"About 36"? Maybe 36.3 or 35.8?


ETA: Not intended to seem hostile, it's a pet peeve of mine.

There's a tasteless joke to be made there, but I think we can all just fill in the blank for ourselves.

 

[The Nimble Pianist]

I think the analogy to BIID can only go so far. The "tough call" seems to diminish as practical function of the body part diminishes. I think it would be much less controversial for someone to have an earlobe or foreskin removed than to have a functional limb removed. Sex organs, like earlobes, just aren't in the same functional category as arms and legs. Furthermore, having a limb amputated is an obvious disability while being the opposite sex is not.

 

[Dessi]

The disorder that immediately sprang to mind was Body Integrity Identity Disorder, in which people feel that a part of their body does not belong to them and seek to have it amputated. I realised that if I looked at it the same way as transgenderism/gender identity disorder, there really should be little objection to allowing such people to have access to amputation as a treatment, where psychological treatments fail. Yet my gut instinct is that it is wrong to allow someone to create a less complete body, even though I can't really rationalise why I should think this.

I usually make the comparison between prescribing diet pills and liposuction to an anorexic, and prescribing hormones and reconstructive surgery to trans people. An anorexic is likely to involuntarily kill herself, they will not cure the underlying body image disorder; a trans person is likely to benefit enormously, eliminate a lifetime of gender dysphoria.

Is the desire to amputate one's limbs more comparable to the anorexia treatment or the transgender treatment? That is, are amputations maladaptive or disadvantageous?

I believe most of the people who have these amputations would use a prosthesis so others perceive them as disabled.

I know next to nothing about about the subject and have no way of relating to it, I'd be interested to know if surgical amputation reduces feelings of BIID. I'm tentatively not opposed to people obtaining surgery if it relieves their suffering.

wylz comment above has a very interesting perspective.

 

[Wolfman]

I have Body Integrity Identity Disorder. I have been involved in BIID advocacy for nearly 15 years now.

It is correct that there is very little "evidence" that surgery is a success. There haven't been enough studies to formally examine the success (or lack thereof) of surgery for BIID.

However, I personally know about 36 individuals who have had surgery for their BIID. None of them regret it. They all say that since their surgery, they aren't experiencing the disabling distress caused by BIID.

I admit that I have little knowledge of this beyond a few TV shows that have featured it as part of the plot line (mostly medical dramas)...hardly a scientific sampling. I've done a little reading since this topic came up, and what I've seen from an anecdotal perspective seems to support this claim.

For what it's worth, BIID also expresses itself by a need to be paralysed, or blind, or deaf, depending on the person. Please refer to the latest paper by Dr. Michael First for further information on this.

Yeah...this was actually an issue I was gonna' bring up, after doing some reading. There are forms of BIID where people want to remove their eyes, have their spinal cord severed...there are some very serious consequences of these actions.

I could see a financial argument being made, that at least in countries that offer decent social welfare, the state will end up being on the hook to pay for ongoing care of some of these people after their surgery. It would therefore be a hard sell to the public...but on the other hand, someone whose case is that serious may well require ongoing, permanent psychological/medical care to prevent them from taking such action...care that could well be as expensive or more expensive than that they'd require if the surgery were done.

I also doubt that there are any insurance companies that would cover the costs for what would be, by any reasonable definition, a self-inflicted disability.

And selling the idea of having a limb cut off to the general public is hard enough; selling them on the idea of having eyes blinded/removed, or the spinal cord severed...I just can't see that getting wide acceptance.

After a great deal of consideration, I go back to what I said before. I think that amputation (or any similar surgery) should always be an absolute last resort. It should be undertaken only if all other attempts (psychological counseling, drug therapy, etc.) have failed, and if in the judgement of the doctors involved in the case, there's A) a high probability that the individual is in significant danger of inflicting debilitating/lethal wounds, B) ongoing care is absolutely necessary to prevent such injuries, and such care would lead to a significant reduction in their quality of life (ie. living in a permanently drugged haze, or strapped in a straitjacket), and C) such surgery would minimize/eliminate further desires to harm themselves.


And a question for wylz: as an individual with BIID, how do you perceive it...do you consider it to be a mental illness? If given a choice, would you prefer A) to have the BIID 'cured', or B) to have whatever body part you are disassociated from removed?

 

[Wolfman]

I have Body Integrity Identity Disorder. I have been involved in BIID advocacy for nearly 15 years now.

I did a bit of googling, and found your website; your description of your condition, and your feelings, is quite well-written and compelling (for all that I cannot understand it at all).

For others...wylz desires to be a paraplegic, and lives his life mostly confined to a wheelchair, even though he doesn't need one.

I'd highly recommend checking out his website...I'm sure that, like myself, a lot will find it rather strange, and yet I think it also does a great deal to help understand the perspective of people with BIID.

And this post on his website effectively answers the question I asked earlier, "If given a choice, would you prefer A) to have the BIID 'cured', or B) to have whatever body part you are disassociated from removed". wylz advocates for treatment (that alleviates/satisfies the demands of the individual's BIID), as opposed to a cure (which would remove the underlying desire). An interesting quote in this regard:

First, I should point out that I don’t think that transabled folks should be "cured" of their Body Identity Integrity Disorder (BIID). In and of itself, as unusual as it is, I am not distressed because I am transabled, but because I cannot achieve the paralysis I believe I should have. So this post isn’t about curing transabled folks, as much as offering treatment options for those who desire it.


So what do I mean by treatment?

I mean any device(s), procedure(s) or action(s) that assist someone who is transabled in feeling better. I don’t believe that the optimal result of treatment would be the eradication of the transabled feelings, but I do not reject that possibility.
​

I have to admit, my own perspective on this would be to see it as an illness, and to seek a 'cure', rather than 'treatments' that just seem to reinforce these desires. That being said...wylz is really an excellent writer, and presents a compelling case for his perspective. And he raises the very relevant and important issue, that it's not even certain if BIID is a psychological or neurological condition. Little research has been done, and it is still poorly understood.

Honestly, the desire to be a paraplegic baffles me (and I'm certain I'm not the first to say so); but I appreciate the opportunity to understand it better, as opposed to just saying "I don't like it".

 

[wylz]

Thanks to Wolfman for sending me an email to notify me there was further discussion on this. I thought I'd set it up to receive instant email notification, but that hasn't worked

Do people who go for surgery (as opposed to self inflicted amputations) get counselling beforehand to ensure that amputation is the only solution and that there is no other cause for their BIID?

It's a bit of a moot question, really. Surgery is not an available solution. There have been 2 elective amputations done several years ago. These were done after extensive therapy and consultation with mental health professionals. There have been a few black market surgeries done. It is my understanding that the surgeon doing these also insists on referral letters from mental health professionals, similar to how transsexuals need letters before being accepted for SRS.

I think you meant "no other cause than BIID for the desire to be an amputee". It is important to determine that the desire to acquire an impairment is not caused by delusion (like "God made me do it").

As far as I know, the vast majority of people who have ended up with an amputation have done so as a last resort, after working with mental health professionals.

I usually make the comparison between prescribing diet pills and liposuction to an anorexic, and prescribing hormones and reconstructive surgery to trans people. An anorexic is likely to involuntarily kill herself, they will not cure the underlying body image disorder; a trans person is likely to benefit enormously, eliminate a lifetime of gender dysphoria.

This is a good comparison.

Is the desire to amputate one's limbs more comparable to the anorexia treatment or the transgender treatment? That is, are amputations maladaptive or disadvantageous?

There is agreement in the medical community that BIID is not related to Anorexia or other forms of Body Dysmorphic Disorders (BDD). There is an academic paper on this topic, I can provide the reference if you want, I just don't have it on hand. Basically, the major difference is that people with BDD have an erroneous perception of their body (e.g. they think they are too fat when they aren't), whereas people with BIID know their bodies are "normal", but need an impairment.

I believe most of the people who have these amputations would use a prosthesis so others perceive them as disabled.

It has nothing to do with how other perceive us. It's not about being thought to be disabled. It has everything to do with being well in our own skin.

I'd be interested to know if surgical amputation reduces feelings of BIID.

Everyone I've heard from (directly or not) who lost a limb or otherwise acquired the impairment they needed has reported the complete disappearance of the BIID-related anguish.

I could see a financial argument being made, that at least in countries that offer decent social welfare, the state will end up being on the hook to pay for ongoing care of some of these people after their surgery. It would therefore be a hard sell to the public...but on the other hand, someone whose case is that serious may well require ongoing, permanent psychological/medical care to prevent them from taking such action...care that could well be as expensive or more expensive than that they'd require if the surgery were done.

I wrote about this in "Who Has To Pay For Surgery?" (I don't have 15 posts so can't link, you can find the post here: transabled.org/thoughts/sean-thoughts/who-has-to-pay-for-surgery-for-biid-badd.htm ). Basically, if medical assistance is provided to people, then it should be available to people with BIID. The impact of living with BIID is immense. If society is going to support people with bipolar disorder or schizophrenia or anorexia, why not BIID?

I also doubt that there are any insurance companies that would cover the costs for what would be, by any reasonable definition, a self-inflicted disability.

I agree - insurance companies won't fork out money. Just like most insurance companies won't pay for hormones or SRS for transsexual people.. I must ask though: is it self-inflicted? We (people with BIID) did not ask to have BIID, and we have not caused BIID. It is a seriously disabling condition (as an aside, I nearly killed myself last weekend, because I can't bear the (emotional) pain anymore). When the only option left is to acquire a physical impairment, and that impairment appeases the demon, is it so wrong?

And selling the idea of having a limb cut off to the general public is hard enough; selling them on the idea of having eyes blinded/removed, or the spinal cord severed...I just can't see that getting wide acceptance.

Try no acceptance whatsoever. Even the few enlightened surgeons who have been open to do amputations refuse to do spinal cord transections.

And a question for wylz: as an individual with BIID, how do you perceive it...do you consider it to be a mental illness? If given a choice, would you prefer A) to have the BIID 'cured', or B) to have whatever body part you are disassociated from removed?

I've written a fair bit about this. I think you found one of my post. I don't really care if it is a mental illness or a neurological condition or something else. It's all semantics. The reality is - I'm suffering. I'm happy to be labelled as mentally ill if it'll get me the treatment I need.

I wrote about treatment rather than cure, in the same perspective that disability rights activists say that they shouldn't be cured of their disability. This is very much along the ideas of the Social Model of Disability (see en.wikipedia.org/wiki/Social_model_of_disability ).

your description of your condition, and your feelings, is quite well-written and compelling (for all that I cannot understand it at all).

Thank you. I am not surprised you don't understand it - most people don't. Heck, even those of us with BIID don't understand it. We just live with it, and deal with it as best we can.

I have to admit, my own perspective on this would be to see it as an illness, and to seek a 'cure', rather than 'treatments' that just seem to reinforce these desires. That being said...wylz is really an excellent writer, and presents a compelling case for his perspective. And he raises the very relevant and important issue, that it's not even certain if BIID is a psychological or neurological condition. Little research has been done, and it is still poorly understood.

Treatments don't reinforce the desire. Treatment, for instance me using a wheelchair, is the only thing that has helped me stay relatively sane and alive. Having to hide the reason I use a wheelchair is a huge stressor in my life. If as part of the treatment for my BIID, using a wheelchair was accepted, my life would be a lot easier, have a lot more quality. And surgery as a (last resort) treatment option does work - people who have surgery don't experience the BIID demons anymore (although that hasn't been "proven" scientifically).

What's more, neither pharmacotherapy nor psychotherapy have made one bit of difference to people with BIID, as reported in the literature by eminent psychiatrists such as Dr. Michael First or Dr. Christopher Ryan. So the cure you would prefer us to get doesn't exist. Perhaps in 20 years some advance will be made and a solution will be found. But that's not going to help me. I've suffered nearly 40 years of my life already. The cause of BIID is almost irrelevant at this point. Until a non-invasive, less destructive solution is found, please let us access surgery. Sure, it's too late once you've had surgery. But it's also too late after you've killed yourself.

I appreciate the opportunity to understand it better, as opposed to just saying "I don't like it".

And I appreciate your willingness to read, discuss and learn about BIID. Rare are the people who don't just have a knee-jerk reaction and hurl invectives at transabled folks.

 

[Wolfman]

I must ask though: is it self-inflicted? We (people with BIID) did not ask to have BIID, and we have not caused BIID. It is a seriously disabling condition (as an aside, I nearly killed myself last weekend, because I can't bear the (emotional) pain anymore). When the only option left is to acquire a physical impairment, and that impairment appeases the demon, is it so wrong?

wylz,

I understand your argument; but there is a difference between the affliction (BIID) and the 'treatment'. The former is involuntary; the latter is voluntary. In order for you to argue that it is involuntary, you'd have to argue for some sort of insanity, where the person doing it was unaware of what they were doing, or of what the results would be. And very obviously, you are not making that argument; quite the opposite, you are arguing that this is a very carefully thought out and deliberate decision.

I'm afraid that your argument seeks to equate the condition (which is involuntary) with the treatment (which is voluntary). While I can appreciate (even though not understand) the anguish this condition causes you, such an action (amputation of a limb, severing of the spinal cord, etc.) would by any reasonable definition be a self-inflicted injury, as a result of a non-self-inflicted condition.

Try no acceptance whatsoever. Even the few enlightened surgeons who have been open to do amputations refuse to do spinal cord transections.

Lacking clear legislation to make such surgeries legal, I can understand why...the potential for lawsuits is phenomenal. They could end up losing their licenses, being imprisoned, etc.

I've written a fair bit about this. I think you found one of my post. I don't really care if it is a mental illness or a neurological condition or something else. It's all semantics. The reality is - I'm suffering. I'm happy to be labelled as mentally ill if it'll get me the treatment I need.

Yes, that sense of desperation is rather clear in your writing, and is an aspect of BIID that I hadn't really considered before, but that certainly makes sense.

I wrote about treatment rather than cure, in the same perspective that disability rights activists say that they shouldn't be cured of their disability. This is very much along the ideas of the Social Model of Disability (see en.wikipedia.org/wiki/Social_model_of_disability ).

I'd point out that disability rights activists who oppose cures for their disability are very much in the minority among the disabled community. I have a number of disabled friends (blind, deaf, missing limbs, etc.), and there is not a single one of them who, if given the opportunity to have their disability cured, wouldn't leap at the chance.

I understand the source of the disability rights movement...they want disabled to be seen as the same as everyone else. Not as different, not as sick, not as 'less' than others, etc. And in that regard, I agree entirely. A great many disabled people have made phenomenal accomplishments. I myself have no such disabilities, but even being an 'able-bodied person', I still wish my body was better...that I could run faster, that I didn't need glasses, etc. Desiring or admitting that I'd like to be 'better' than I am now doesn't mean that I'm therefore saying that I'm unworthy or inferior to others. And I'd argue the same with those who are disabled...treatment should be done not because they are 'less' than others, or inferior to others...but simply because they'd like to be better than they are now (whatever their perception of 'better' may be).

I agree that those who are disabled, and don't want to be cured, should have the right to make that choice. But they are sadly misguided when they seek to tell others in the disabled community that it is wrong to seek a cure for their condition.

What's more, neither pharmacotherapy nor psychotherapy have made one bit of difference to people with BIID, as reported in the literature by eminent psychiatrists such as Dr. Michael First or Dr. Christopher Ryan. So the cure you would prefer us to get doesn't exist. Perhaps in 20 years some advance will be made and a solution will be found. But that's not going to help me. I've suffered nearly 40 years of my life already. The cause of BIID is almost irrelevant at this point. Until a non-invasive, less destructive solution is found, please let us access surgery. Sure, it's too late once you've had surgery. But it's also too late after you've killed yourself.

And that's the reason why I asked the question about cures vs. surgeries. Let me expand on it with two further questions:

1) There is limited funding available for research into BIID. Would you prefer that those funds go into finding a cure (which would significantly decrease or eliminate the symptoms of BIID), or go into research on potential treatments, regardless of whether a cure exists or not.

My personal feeling (as a non-BIID sufferer) is that while I'd certainly like to see more research on treatments, I'd place more priority on trying to identify actual causes, and find out if there is a way to cure the condition entirely. As a BIID activist, and judging from your posts, I rather suspect you'd take the opposite position.

And I appreciate your willingness to read, discuss and learn about BIID. Rare are the people who don't just have a knee-jerk reaction and hurl invectives at transabled folks.

No invective here. I agree 100% that BIID is a real condition, and that it causes significant suffering in those who have it. It's not their fault for having it, it's not something they wanted.

My interest lays more in first understanding it better (and thanks again for contributing your experiences and perspectives to this discussion), and second in discussion on exactly how those with BIID should be treated.

 

[Wolfman]

I was just re-reading what I wrote, and noted this:

And I'd argue the same with those who are disabled...treatment should be done not because they are 'less' than others, or inferior to others...but simply because they'd like to be better than they are now (whatever their perception of 'better' may be).

Upon further consideration, this argument could be used as a pro-surgery argument for BIID. The perspective of what will make me 'better' is, obviously, very relative, and will vary from individual to individual. There are some blind people who would love to have their eyesight restored, and others who are quite happy the way they are. I myself wish that I could run faster, but others wouldn't care one way or the other about their running speed.

A BIID sufferer sees themselves as being 'better' if a part of their body is removed/damaged. I don't see it that way...but it's not my body.

A blind person who wants surgery to let them see again, can get access to such surgery if they feel that it is desirable, that it will make them 'better'; and they have the option of not getting such surgery, if they prefer to remain blind (obviously, I'm talking about people with conditions that are treatable). By extension, I think an argument could be made that a person who can see, but who feels that they will be 'better' if they are blind, should have access to such surgery.

The whole thing still makes me incredibly uncomfortable, my emotional reaction is very much against making such surgeries available; yet if one accepts BIID as a permanent and uncurable condition (which at present it seems to be), and such surgery would significantly improve the quality of life for people suffering from the condition...I can see rational arguments in favor of it.

 

[Lithrael]

While I find this as difficult to personally empathise with as transgender issues (if I woke up tomorrow with a horror tentacle with eyeballs on it I would say, wow, I have a horror tentacle) I don't find it that hard to imagine (if my friend Jenny woke up with a horror tentacle with eyeballs on it she would want it to go away and I would not feel like she was being at all unreasonable).

As long as other treatments fail to bring significant relief to BIID sufferers I see no reason to discourage them from getting what they want. As far as 'society's burden' we allow people to enjoy recreational activities with staggering amounts of risk every day for no better reason than how much fun it is, and while some of us might frown at them, we don't cast them out when they break themselves. Do we have any reason to act more harshly towards a comparatively tiny number of people who want to skip the street luge part and go straight to the paraplegia?

 

[JWideman]

I think it's safe to say that people with BIID are already pretty screwed up and that amputation is going to do more good for them than bad. I mean think about it like this: NOBODY in good mental health WANTS to lose limbs. People with BIID don't simply want attention, or disability benefits, or any other sane if immoral reasons - they want a perfectly working limb removed because they can't accept it being a part of them.

 

[sophia8]

wylz should be thanked for coming here and explaining his condition so well. It's a pity that his site is down at the mo, I'd like to read some of it. I'd like to know more about the causes of the condition, especially wlyz's particular variation; I can see how damage to the brain's body-mapping function can produce the certainty that you shouldn't have a limb. But feeling you should be paraplegic, or blind? How would that work? What could cause it?

As to the question of whether BIID sufferers should have surgery - on an emotional level, I'm screaming "NO!!" It's the deliberate mutilation / destruction of a healthy body. But looking at it purely logically, if the person can afford to have it done, it has no impact on anybody else and it will definitely cure the condition - why not? How is it different from non-medical plastic surgery?

Well, I'll try looking up the website later. Thanks again, wylz.

 

[SumDood]

...It is a seriously disabling condition (as an aside, I nearly killed myself last weekend, because I can't bear the (emotional) pain anymore)....

While I and most here have never had to deal with the horror and pain you do so on a daily basis, please do not take this irreversible step. I could give you a ton of 'life is worth living' BS, but I really suck at it and I'm sure you've heard it all before. I'm sure you've had counselling and I hope you continue so you can get some relief from your heartbreaking condition and continue enlightening people regarding your plight.

 

[Darat]

The link to the "Who pays" article is: http://transabled.org/thoughts/sean-thoughts/who-has-to-pay-for-surgery-for-biid-badd.htm

wylz - thanks for taking the time to post here, this was a subject that I knew something about but had never the thoughts of someone who has the condition.

 

[wylz]

Apologies for delay in responding.

I understand your argument; but there is a difference between the affliction (BIID) and the 'treatment'. The former is involuntary; the latter is voluntary. In order for you to argue that it is involuntary, you'd have to argue for some sort of insanity, where the person doing it was unaware of what they were doing, or of what the results would be. And very obviously, you are not making that argument; quite the opposite, you are arguing that this is a very carefully thought out and deliberate decision.

You are correct. But that argument is lacking something I can't quite put my finger on. It seems like it is assumed that it is preferrable to "chose" to live in emotional misery. Yes, it would be a "choice" to go for elective surgery. But I'd argue that given the alternatives, it is a choice only on the surface.

Lacking clear legislation to make such surgeries legal, I can understand why...the potential for lawsuits is phenomenal. They could end up losing their licenses, being imprisoned, etc.

In fact, there is no legislation specifically forbidding such surgeries in any of the "major" Western countries. IANAL, but everything I've read on this topic confirms this. There is the concept of "mayhem" which is still in the books which appears to forbid it, but academics have debated this without reaching a clear conclusion.

1) There is limited funding available for research into BIID. Would you prefer that those funds go into finding a cure (which would significantly decrease or eliminate the symptoms of BIID), or go into research on potential treatments, regardless of whether a cure exists or not.

I'd suggest that question is a red herring. We need more research into BIID, period. Research ought to focus on the cause of BIID. From there, finding a "cure" or "treatment" will follow.

I'd further suggest that for those of us who have been suffering from BIID for so long, and have tried every avenue available at the time, allowing surgery would be both humane and further the understanding of how to "resolve" BIID.

My personal feeling (as a non-BIID sufferer) is that while I'd certainly like to see more research on treatments, I'd place more priority on trying to identify actual causes, and find out if there is a way to cure the condition entirely. As a BIID activist, and judging from your posts, I rather suspect you'd take the opposite position.

Not necessarily. I might appear particularly self-centered, but frankly, I don't give a damn about a cure 25 years from now. I want relief NOW. The only chance I currently have to get relief is to get surgery.

I myself wish that I could run faster, but others wouldn't care one way or the other about their running speed.

One might argue that your wish to run faster is not disordered, or at least doesn't cause you so much anguish that you are unable to function in day-to-day life (wild assumption here). That is a significant difference from BIID.

A blind person who wants surgery to let them see again, can get access to such surgery if they feel that it is desirable, that it will make them 'better'; and they have the option of not getting such surgery, if they prefer to remain blind (obviously, I'm talking about people with conditions that are treatable). By extension, I think an argument could be made that a person who can see, but who feels that they will be 'better' if they are blind, should have access to such surgery.

Agreed. I'd further say that it's not because *I* seek surgery for myself and others who need it that I necessarily think surgery is the only solution to BIID. Different people will cope in different ways.

The whole thing still makes me incredibly uncomfortable, my emotional reaction is very much against making such surgeries available; yet if one accepts BIID as a permanent and uncurable condition (which at present it seems to be), and such surgery would significantly improve the quality of life for people suffering from the condition...I can see rational arguments in favor of it.

I fully appreciate how uncomfortable you, and other people, are about this. I think it ties in to a general discomfort about *disabilities* in general. Society is much more accepting of people with disabilities, but there is still rampant ableism. Even people with disabilities who are aware of such things are guilty of ableist attitudes. I am currently writing a paper on that topic - looking at studies around the negative bias of medical practioners against disabilities, and how that directly impacts the attitudes towards possibly providing elective surgery for BIID.

As long as other treatments fail to bring significant relief to BIID sufferers I see no reason to discourage them from getting what they want. As far as 'society's burden' we allow people to enjoy recreational activities with staggering amounts of risk every day for no better reason than how much fun it is, and while some of us might frown at them, we don't cast them out when they break themselves. Do we have any reason to act more harshly towards a comparatively tiny number of people who want to skip the street luge part and go straight to the paraplegia?

Thank you for that - a most excellent point.

I think it's safe to say that people with BIID are already pretty screwed up and that amputation is going to do more good for them than bad. I mean think about it like this: NOBODY in good mental health WANTS to lose limbs. People with BIID don't simply want attention, or disability benefits, or any other sane if immoral reasons - they want a perfectly working limb removed because they can't accept it being a part of them.

Thank you, I think Being called screwed up has rarely felt so good - and your point is solid.

It's a pity that his site is down at the mo, I'd like to read some of it.

I'm not aware that the site went down. Error logs don't show outtages. Have you tried to go back?

I'd like to know more about the causes of the condition, especially wlyz's particular variation; I can see how damage to the brain's body-mapping function can produce the certainty that you shouldn't have a limb. But feeling you should be paraplegic, or blind? How would that work? What could cause it?

It's a good question, and one nobody seems to be able to answer properly. The idea of body schema or body map in the brain is what some researchers are looking at.

As to the question of whether BIID sufferers should have surgery - on an emotional level, I'm screaming "NO!!" It's the deliberate mutilation / destruction of a healthy body. But looking at it purely logically, if the person can afford to have it done, it has no impact on anybody else and it will definitely cure the condition - why not? How is it different from non-medical plastic surgery?

There have been several academic papers on the comparison between cosmetic surgeries and BIID surgery. It's potent stuff.

@Darat, thank you for linking to the post.

 

[Wolfman]

I fully appreciate how uncomfortable you, and other people, are about this. I think it ties in to a general discomfort about *disabilities* in general. Society is much more accepting of people with disabilities, but there is still rampant ableism. Even people with disabilities who are aware of such things are guilty of ableist attitudes. I am currently writing a paper on that topic - looking at studies around the negative bias of medical practioners against disabilities, and how that directly impacts the attitudes towards possibly providing elective surgery for BIID.

As to the rest of your comments...I really appreciate you taking the time, and making the effort, to explain your perspective. However, I wanted to comment on this aspect.

A "general discomfort about disabilities in general". That seems a rather sweeping overgeneralization. It reminds me of the time that a guy hit on me at a bar, and I said no...he immediately accused me of being a homophobe, and of being uncomfortable with people who expressed their sexuality. Nothing could be farther from the truth...I have no problem with homosexuality, have quite a few gay friends, and am quite comfortable with the whole thing (although I myself feel no attraction towards men). It was simply an issue that he wasn't what I was looking for (and had he been a female that I was unattracted to, my reaction would have been the same).

I see your claim in the same light...everyone who disagrees, or who is uncomfortable, is automatically branded as "uncomfortable with disabilities". My feeling in hanging out with my disabled friends is the same as my feeling in hanging out with my gay friends, or my black friends, or whatever other category you'd care to mention. That is, I see them and treat them no differently than anyone else.

I'd say that the core issue is one that is much more personal, and in some ways much simpler, than your conclusion. It is an issue of self-identification and empathy. When my friend who's leg was amputated says that he wishes he still had it, I can understand that completely...because if I was in his situation, I'd want the same thing. It's not because of some concept of being inferior or different...it goes back to that thing of my personal concept of how I can be 'better'. Which, even as an able-bodied person, is still something I want.

I think that the issue is simply that, when someone with BIID says, "I wish I was paralyzed" or "I wish I was blind" or "I want my leg cut off"...it is something that I simply am entirely unable to identify with, or empathize with. I not only have never had a feeling like that, I cannot even envision myself having such a desire.

This is why this thing is so difficult for me. I can empathize entirely with you when you talk about feelings of desperation, of wanting to get rid of the cause of your discomfort/anguish, of wishing others could understand you, etc. That part is no problem. But paralyzing yourself? That's just not a sentiment that I think I could ever really empathize with, it is just too entirely alien to me.

Your comments have, however, helped a great deal in helping me understand your situation (and, by extension, that of some other BIID sufferers); I wish that we could prove as enlightening and helpful to you, as you have been for us.

 

[wylz]

everyone who disagrees, or who is uncomfortable, is automatically branded as "uncomfortable with disabilities".

I'm sorry I didn't express myself properly. I don't believe that anyone who disagrees or who is uncomfortable with the thought of surgery for BIID should automatically be braneded as "uncomfortable with disabilities".

I do firmly believe that society, in general, still has a negative bias against disabilities. This is not just a personal belief. Disability scholars have written about this. The level of discrimination against people with disabilities in employment, transportation, relationships, access to stores, restaurant, you-name-it also shows society has such a negative bias. Things are slowly changing, and there are obviously lots of people who aren't biased so. This bias is referred to as ableism in disability studies circles. There are also many people who have disabilities who have internalisted ableism.

That doesn't mean I believe having an impairment is all good, nor even just "neutral". I do think that things are made worse from interacting with a non-accessible society. But the fact is, impairments have a lot of negatives.

It does, however, mean that there's a certain amount of negative bias (conscious or not) that influences people's perception of BIID and of surgery as an option for people who have BIID.

I can empathize entirely with you when you talk about feelings of desperation, of wanting to get rid of the cause of your discomfort/anguish, of wishing others could understand you, etc. That part is no problem. But paralyzing yourself? That's just not a sentiment that I think I could ever really empathize with, it is just too entirely alien to me.

That's not an unusual sentiment And I can see how people can feel this way.

 

[Darth Rotor]

The only known cure for BIID is to in fact do the amputation

How is that a "cure" for the condition? It doesn't fix what's wrong inside the brain.

 

[Luciana]

Amputation of limbs is different from transgenderism, imho, because it lowers your chance of survival should disaster occur. This might be why, even unconsciously, amputation seems so much stranger, at a gut level.

If you're missing a limb, you're less apt for survival in case of emergencies. Not true at all with sex change or cosmetic surgery.

There's a case to be said that voluntary amputation does place a burden on society, in that amputated people do depend on others for some things, if not on a everyday basis, but more in a we-all-came-from-a-cave kind of survival. People with fewer limbs are less capable when everything goes wrong. Much less so nowadays, definitely, but maybe we're just wired to trust on our four limbs to feed ourselves and run from prey.

 

[Guybrush Threepwood]

Amputation of limbs is different from transgenderism, imho, because it lowers your chance of survival should disaster occur. This might be why, even unconsciously, amputation seems so much stranger, at a gut level.

If you're missing a limb, you're less apt for survival in case of emergencies. Not true at all with sex change or cosmetic surgery.

There's a case to be said that voluntary amputation does place a burden on society, in that amputated people do depend on others for some things, if not on a everyday basis, but more in a we-all-came-from-a-cave kind of survival. People with fewer limbs are less capable when everything goes wrong. Much less so nowadays, definitely, but maybe we're just wired to trust on our four limbs to feed ourselves and run from prey.

Do you have any evidence for this? It seems completely bizarre to me. Anecdotally there is plenty of evidence that few people care consciously or unconsciously about disaster survival, given the levels of obesity, lack of physical fitness, ignorance about living outside of cities, willingness to get pregnant etc, etc, around the world.

As an aside, a small English/survival tip, you want to run towards prey, but away from predators.