Understanding Wanna-be Amputees: It Helps A Little Bit If You’re a Paraplegic With Two Truly Superfluous Limbs
by Treadmarkz
It’s called Body Integrity Identity Disorder, and it’s sufferers are called “wanna-bes”, as in “I’ve got two legs but I wanna-be an amputee. It is not listed or accepted as an official disorder. Sounds like something I made up, but there are cases of it all over the world, as I discovered in a documentary by Melody Gilbert called “Whole.” The Wanna-bes in the film referred to their voluntary amputations as “body correction surgery.”
Having been disabled since birth, I thought this idea was completely alien to anything that I’d ever imagined could possibly cross the human mind.
Though I don’t know why I’m surprised. We are interesting creatures.
But I almost drew the line when one of the subjects of the study, who had two perfectly good legs, referred to one of them as “superfluous.” I thought “Two perfectly good legs and you don’t want them, in fact deem them unnecessary?” This is when the idea of a Paraplegic and Amputee’s Goodwill Store” occurred to me.
But half-way through the film I realized that I could identify in some small way. I mean I have many times damned my own useless legs for getting in my way. I don’t damn my disability, just my legs being there for no reason. So much extra work, just getting in the car and having to bring my legs too.
The film told the story of a non-amputee who lived as one by tying one leg up inside his pant leg. This man said “I don’t feel incomplete [being forced to live with both of his legs intact], I just don’t feel like that part of my body belongs to me.” Okay that is close to what I have described, with my own legs, but again, mine are useless! I joke about cutting mine off all the time, but I wouldn’t do it. I’ve got stuff to do!
Another wanna-be’s wife helped him cause himself frostbite so he could realize his dream of becoming an amputee, while another threatened to leave her husband if he went through with it. This man was willing to not only risk his safety and his life, but, if he made it through, his marriage. He was willing to die for it. This was not an uncommon expression of desperation among the wanna-bes. One said that if he found he could never become an amputee he might consider suicide.
Which brings us to Dr. Robert Smith of Scotland, the Jack Kevorkian of wanna-be amputees, if you will. One of his patients pretty much fought him into submission, convinced him to perform the amputation by making the doctor see that he was going to keep hurting himself, either by giving himself frostbite or by shooting himself in the leg, until he got what he wanted. So now not only do we have the right-to-die issue on the table, we’ve got the right to lose a limb surgically for no reason. And now Smith is the poster boy for voluntary amputation surgery, or “body-correction”. Because Smith could see beyond a doubt that the safety of his patient was in extreme jeopardy and he had to act to make sure that he did not let the man’s condition cause him harm that he could prevent.
It’s called the Hippocratic Oath. Millions of doctors world-wide are sworn to it. It is not a requirement like the oath one takes before taking the witness stand, but among doctors who do choose to take the oath, it is considered binding; a matter of honor. Part of the oath is to “never do harm to anyone”. The problem here is that, sure, you could say that cutting off someone’s leg when it is not injured, infected, damaged or otherwise endangering the patient is indeed harming him. But if he is threatening to shoot his leg off at home, he could be doing himself much more damage than a surgical amputation would.
Another wanna-be said if his dream did not come true, he’d probably be alright, because of all of the other things that’d happened in his life. He said it with almost the same pensive expression that, in the movie “Field of Dreams,” Dr. Moonlight Graham said it wasn’t a tragedy that he only got to play baseball for a day, but that “If I’d only gotten to be a doctor for one day, that would have been a tragedy.”
So, clearly this is very serious for the people who have this disorder, and I mean to treat it as such. But when you don’t understand, you make light, and I’ve gotta be honest, after seeing this film, I still don’t completely understand. Not completely.
NOTE: Please read the very informative first response to this posting.
BIID seems weird and alien at first, yes, but it is a very real condition that affects a lot of people. I am one of these people. I have needed to be paraplegic as far back as I can remember. I am nearing 40, and I can trace memories back more than 35 years.
Because BIID does not manifest itself only by a need to be an amputee. Other people, such as myself, need to be paraplegic. Others need to be deaf, others yet need to be bling.
You are correct it is not a “recognised” condition. Yet. Only because it has not been included in the DSM. But the lead editor of the DSM, Dr. Michael First, is currently conducting a follow up to his original study on BIID that he did a few years ago and has indicated that it is likely to be included in the next edition. But even if it wasn’t included in the DSM, it doesn’t mean it’s not real. It only means there was not enough data to include it. Refer to the official DSM’s webpage for more on this:
http://www.dsmivtr.org/2-1faqs.cfm
Yes, we’d rather be dead than NOT disabled. Isn’t that a refreshing change in attitude from those who say they’d rather be dead than disabled? I mean, come on, a recent study has shown that over 50% of americans would rather be dead than disabled… Now, which one is the most strange?
The hippocratic oath is often bandied about. “first do no harm”. But the surgeons’ refusal to help us is actually what is doing harm. You cannot begin to understand the amount of anguish and emotional pain we live with. Day after day. Refusing us surgery, the only thing that actually helps with BIID symptoms, is condemning us to a life of utter misery. I wrote more about this here:
http://biid-info.org/Hippocratic_Oath
You may also wish to read http://transabled.org a multi-authored blog about the experience of living with BIID.
Sean O'Connor
July 17, 2008 at 3:03 PM
Thanks, Sean. I appreciate the input and insight from someone who sees it from the perspective of the people in the film. Very interesting point you bring to the table though, about people who would “rather be dead than NOT disabled”, instead of “rather be dead than be disabled.”
Also it was interesting to know that there are BIIDs who would rather be paraplegic. So you’d prefer to have two legs but just not have them be useful? This is getting very interesting for me, sir. I will definitely check out the links you sent me.
treadmarkz
July 17, 2008 at 4:42 PM
So anyone who wishes to go from one state of “ability” or “impairment” to another is “transabled” according to the links Mr. O’connor left in his comment. This means that any disabled person who wishes they could walk (which is, let’s face it, a large percentage) is transabled. I would beg them to be very aware of what they are getting into, those who want to become disabled. There are bed soars, transportation issues, accessibility issues, the prejudices of others, and a million other things to think about.
treadmarkz
July 17, 2008 at 4:47 PM
Dear treadmarkz,
You are most welcome. I do my best to teach people about BIID, because it is such a controversial and misunderstood condition.
And yes, I would rather have both my legs, but be paralysed. Specifically at L1. I don’t know why at that level. It’s how I’ve *always* seen myself, even before I knew that what I needed could be explained by using “L1 SCI” to describe it. I have no desire to be an amputee, though I think it would not phase me too much to lose a limb. Becoming an amputee would not, however, help with my BIID, unless I were a para as well.
The word transabled was not coined with the idea of people with disabilities wishing able bodies, though it is an interesting thought, which I shall ponder and discuss at a later date. Thank you.
I am very well aware of the downsides of being paraplegic. I know more about paralysis than most doctors that don’t specialise in this field (even if I do say so myself). I probably know as much as is humanly possible to know about the experience of being paralysed, for anyone who isn’t. I know the prejudices and discrimination from personal experience: I have been living 100% of my public life as a wheelchair user. People do not know I can walk. I go to work, shopping, movies, restaurants, travel, etc, in a wheelchair. I was married to a paraplegic (from a car accident) who knew about my BIID. I have many friends with disabilities, some know about BIID, some have no inkling that I am not just like them.
And even knowing about all that, I still need to be a paraplegic. It is not logical, it does not make sense. It just is.
Sean O'Connor
July 17, 2008 at 8:40 PM
As to the question of “why”: noted behavioral neurologist V.S. Ramachandran (Google his name to see what he’s done) who works at the University of San Diego Center for Brain and Cognition is conducting a study on BIID and his early findings indicate that BIID is neurological in origin, and is caused by a problem with the part of the brain that processes body image. Since the research is ongoing, there’s little that has been published about this, but you can see the Newsweek article that mentions this: http://www.newsweek.com/id/138932 (Paul McGeoch who is quoted in the article is Ramachandran’s assistant).
Claire
July 18, 2008 at 9:01 AM
I didn’t know it was a name for these wanna-be amputees. I still think it’s kind of crazy for a person to pretend to an amputee. Losing my leg was very hard for me to deal with, be fore this happened to me I had never thought of being an amputee.
ampufreedom35
March 24, 2009 at 10:47 PM
This is one of the most intriguing disorders that I have ever heard of. What concerns me the most about this condition is that nothing that I have read or heard yet deals with the primary issue of WHY. Why does an individual with BIID possess the anguish and overwhelming desire to paralyzed? Is there some sort of hunger for sympathy from others that is missing in their lives? Do they feel ignored by their peers or society as a whole so much so that they want to give up their freedom of movement in order to gain this kind of recognition and attention from others? I assume that there is a much deeper and complex explanation than this but, if so, why is not this most seemingly obvious theory not one of the main points of discussion — if nothing more than to dispel this reservation as incorrect and prejudicially biased?
I don’t know, but I would think that other amputees and paraplegics must naturally take great offense in a belief system that embraces the solution to their spiritual freedom lies in ridding themselves of the use of their God-given limbs. Though I mean not to be critical, I am at a loss with understanding this condition even in the slightest since I have always been grateful for the full functional use of all my appendages and accordingly maintain the highest respect and admiration for the disabled who do the best with what they have.
AtPeacewithFunctionalLimbs
May 29, 2009 at 12:49 AM
I also find this condition very hard to understand. My partner is an amputee and it is so hard for him to deal with the pain of wearing a prophesies, the crippeling phantom pains and prejudices from narropw minded ignorant people! I do not think that this disorder could ever be named as a medical condition. It is a mental disorder and the people who have it need to seek psychiatric help (i hope not to cause any offence) but i think there is obviously a very deep underlying issue.
AtPeaceWithFunctionalLimbs, my partner says that he has seen a documentary about it and it is the need for attention. Apparently one of the case studies was a man who as a yound child saw all the attention sympathy and love that his disabled relative got and associated this with being disabled and craved it ever since.
Laura
July 1, 2009 at 12:43 PM
Laura, Your arguments and thinking are far too simplistic. The condition manifests itself in a multitude of ways and it isn’t possible to generalize on the basis of a couple of cases. But I will say this: I am in regular contact with numerous like-minded people and can tell you that they are all intelligent, usually well educated and perfectly ‘regular’ guys – apart from this ‘condition’. You may find it difficult to accept but in that case, you can simply disregard us. We are not trying to harm other people. Our only request is for surgery, then to be left to lead our lives the way we wish and in peace. Thank you.
Gonnabe Italia
September 21, 2009 at 9:07 AM
Laura, I think that perhaps you have not done much homework about BIID as perhaps some of us have. I also have BIID. This, in my case, and from what I know of most others of us, has nothing to do with a lack of attention. My particular form of BIID stems from a need to be a double above the knee amputee, however “when” I achieve this, I plan on wearing prosthetics when in public. I know it’s difficult to understand that someone would need to have their limbs removed, only to wear prosthetic devices, but if I have my way, it will be as unnoticeable as possible to the world at large.
AtPeaceWithFunctionalLimbs, actually, most of the research involved with BIID it attempting to discover the root causes. Current research is fairly convincing that the issue is Neurological, and not Psychological in nature. One of the more recent developments is realizing that in the case of those with BIID, there is an issue with development of the right parietal lobe in the area of the brain where the brains “map of the body” is located. You say that “why is not this most seemingly obvious theory not one of the main points of discussion.” Believe me, there are people out there much smarter than me who have been dealing with this for much longer than I have (I am in my 20’s). These more obvious aspects/theories/whatever have been explored, in full.
At present, with the knowledge there is available, there are 2 ways to fix BIID. Either offer us the surgeries that we so desperately need. I have a time line established where if I am not able to get surgery, my legs WILL be going under a train, or fix my brain. Not with drugs, those don’t work, but for real re-wire my brain. Since the latter is not possible, and will not be in the forseeable future, option 1 is the only viable one out there.
Bryan
September 27, 2009 at 8:25 AM