I have a lot of great interviews in the queue right now, from mild to wild, but I’m absolutely thrilled with the one that’s going up today, “One Hand Jason“, an interview which discusses Jason’s decision to amputate one of his hands in order to deal with what he had always perceived as a devastating birth defect — that is, being two-handed. Click through to read it now, and come on back here to comment (but please, read it before commenting).
Comments
260 responses to “One Hand Jason Interview Posted”
Uraniumhobo – thanx for explaining. i cannot imagine what he goes through with keeping a secret. sometimes even much smaller lies can annoy you mentaly really hard but this … i guess he doesn’t really have a choise right now. just think about the reaction from people especially ehose who are close to him
Uraniumhobo – thanx for explaining. i cannot imagine what he goes through with keeping a secret. sometimes even much smaller lies can annoy you mentaly really hard but this … i guess he doesn’t really have a choise right now. just think about the reaction from people especially ehose who are close to him
Hi Everybody. Jason here. Whew, what a lot of cool and thoughtful comments! I learned a lot and had such a flow of feelings reading those. Yeah, some folks kinda dissed me, and others kinda dissed people who wrote positive stuff. That’s so cool…people’s minds stirred up. People putting themselves in places they wouldn’t go usually. People hearing about BIID for the first time, then feeling strongly enough to write a comment. Sweet! Just what I hoped for! Way huge thanks to Shannon for making all this possible!
I’ve got some little comments on some of the questions people asked a lot… My parents are both dead, but no way did I have enough nerve to tell them when they were alive, and no way would I have put them through that worry. I feel like our relationship has to be stronger before I tell my lover. I only know of like three BIID amputees who’ve gone public. No way am I going to be the forth.
With the money people gave, I took it with the understanding that I would earn it with community activism after I got healed, which I did, and they were cool with that. Someone suggested helping other amputees, especially accidental ones. I’ve been writing to a lot on the internet and by phone, and I hope this interview can help people with understanding too. People say my attitude and adaption to one-handed life is very inspiring…Does the fact that I wanted my amputation taint that? I totally take every precaution to avoid making amputees who are having a hard time feel bad. From their reactions, they seem to like the interactions.
Jason
Hi Everybody. Jason here. Whew, what a lot of cool and thoughtful comments! I learned a lot and had such a flow of feelings reading those. Yeah, some folks kinda dissed me, and others kinda dissed people who wrote positive stuff. That’s so cool…people’s minds stirred up. People putting themselves in places they wouldn’t go usually. People hearing about BIID for the first time, then feeling strongly enough to write a comment. Sweet! Just what I hoped for! Way huge thanks to Shannon for making all this possible!
I’ve got some little comments on some of the questions people asked a lot… My parents are both dead, but no way did I have enough nerve to tell them when they were alive, and no way would I have put them through that worry. I feel like our relationship has to be stronger before I tell my lover. I only know of like three BIID amputees who’ve gone public. No way am I going to be the forth.
With the money people gave, I took it with the understanding that I would earn it with community activism after I got healed, which I did, and they were cool with that. Someone suggested helping other amputees, especially accidental ones. I’ve been writing to a lot on the internet and by phone, and I hope this interview can help people with understanding too. People say my attitude and adaption to one-handed life is very inspiring…Does the fact that I wanted my amputation taint that? I totally take every precaution to avoid making amputees who are having a hard time feel bad. From their reactions, they seem to like the interactions.
Jason
“People say my attitude and adaption to one-handed life is very inspiring…Does the fact that I wanted my amputation taint that? “
Some would say that yes, absolutely it does. Such posts aren’t too hard to find, googling around the BIID stuff, there are people out there in the “disabled” community who are quite angry about the idea that people are going for voluntary handicapping modifications. Whether or not that’s “reasonable” is another discussion, but certainly the feeling is out there.
It’s part of the interesting reading, anyway.
Speaking of the similarities with GID/trans, if you google around “womyn-born-womyn” you can find similar attitudes about transwomen (people may recall years ago this came up in context of the Michigan Womyn’s Music Festival). There too the context seems to be “are you overcoming” (in that case, being raised as a girl in the patriarchy) or not. (Surely Giles can chime in :))
I definitely appreciated this interview, thanks for having it.
“People say my attitude and adaption to one-handed life is very inspiring…Does the fact that I wanted my amputation taint that? “
Some would say that yes, absolutely it does. Such posts aren’t too hard to find, googling around the BIID stuff, there are people out there in the “disabled” community who are quite angry about the idea that people are going for voluntary handicapping modifications. Whether or not that’s “reasonable” is another discussion, but certainly the feeling is out there.
It’s part of the interesting reading, anyway.
Speaking of the similarities with GID/trans, if you google around “womyn-born-womyn” you can find similar attitudes about transwomen (people may recall years ago this came up in context of the Michigan Womyn’s Music Festival). There too the context seems to be “are you overcoming” (in that case, being raised as a girl in the patriarchy) or not. (Surely Giles can chime in :))
I definitely appreciated this interview, thanks for having it.
I’d suggest that someone with an involuntary amputation that is angry at someone with a voluntary amputation is more so dealing with their own personal issues.
I’d suggest that someone with an involuntary amputation that is angry at someone with a voluntary amputation is more so dealing with their own personal issues.
If a dude wants to cut off his hand, how does that affect you?
It doesn’t, now untie your panties, geez.
Fascinating article.
If a dude wants to cut off his hand, how does that affect you?
It doesn’t, now untie your panties, geez.
Fascinating article.
what a fascinating and beautiful person! i’m amazed, and in awe of his own devotion to his beliefs about his body–i’d never be able to put aside my fear of massive pain to do something like that. i find him brave in so many ways.
what a fascinating and beautiful person! i’m amazed, and in awe of his own devotion to his beliefs about his body–i’d never be able to put aside my fear of massive pain to do something like that. i find him brave in so many ways.
Sarah: when someone takes a particular action it can set precedent for how the same situation is dealt with in the future, or for others. This is a radical step taken by someone in order to achieve their set goal, someone who, given the right set of circumstances might help legislation shift irrivocably in one particular direction-a positive or negative one depending on your viewpoint. We don’t live in vacuums-we affect each other. People are allowed their reactions whether you agree with them or not-they’re human. I’d rather see the occasional/torrent of angry/negative comment than I ever would nothing but bland passivism. That doesn’t mean everyone who ‘s comments fall into the former catagory need to take their panties out of a bunch. Even people that may have what is perceived as a negative standpoint can contribute to something positive by adding their voice.
Sarah: when someone takes a particular action it can set precedent for how the same situation is dealt with in the future, or for others. This is a radical step taken by someone in order to achieve their set goal, someone who, given the right set of circumstances might help legislation shift irrivocably in one particular direction-a positive or negative one depending on your viewpoint. We don’t live in vacuums-we affect each other. People are allowed their reactions whether you agree with them or not-they’re human. I’d rather see the occasional/torrent of angry/negative comment than I ever would nothing but bland passivism. That doesn’t mean everyone who ‘s comments fall into the former catagory need to take their panties out of a bunch. Even people that may have what is perceived as a negative standpoint can contribute to something positive by adding their voice.
Shannon I agree with your last point. Speaking as an involuntary amputee, you either deal with what life gives you or you don’t. I personally learned along time ago that I have no room to complain because there are always people worse off than me.
Shannon I agree with your last point. Speaking as an involuntary amputee, you either deal with what life gives you or you don’t. I personally learned along time ago that I have no room to complain because there are always people worse off than me.
best article iv’e read on BME to date. it was great.
Although I can’t relate to feeling like something doesn’t belong to my body or a similar feeling, I do feel happy for this guy for getting such a huge improvement in life.
I mean, who are we to judge really?
maybe medical care should include as well as other surgeries (sex change, plastic surgery etc) amputation procedures for people who can prove they qualify. look at this guy, he’s been miserable for a lifetime and this has literaly saved him. why let someone use a saw or some other gruesome and dangerous method to gain this?
best article iv’e read on BME to date. it was great.
Although I can’t relate to feeling like something doesn’t belong to my body or a similar feeling, I do feel happy for this guy for getting such a huge improvement in life.
I mean, who are we to judge really?
maybe medical care should include as well as other surgeries (sex change, plastic surgery etc) amputation procedures for people who can prove they qualify. look at this guy, he’s been miserable for a lifetime and this has literaly saved him. why let someone use a saw or some other gruesome and dangerous method to gain this?
I read the interview with interest, and the comments with both interest and an intense feeling of exhaustion. I am an individual who has BIID (to answer one question, it is Body Integrity Identity Disorder, yes, 2 “I”). I need to be paraplegic, and have been living 100% of my life as a wheelchair user. I am the owner of http://transabled.org which has been quoted here a few times. I also have put together a community wiki that has collected all the known academic and medical publishing about BIID on http://biid-info.org .
A few things.
@ Jamie and others. There is a significant difference between BIID and anorexia. Anorexia is a form of Body Dysmorphic Disorder. Please forgive me if I simplify the condition 🙂 In my understanding (based on a lot of medical paper reading), people who have BDD tend to think that their body is not “normal”, and seek to make it normal. People with BIID know their body is “normal”, but don’t fit in their body. BIID is much closer to GID than to BIID.
@ Giles. I must admit, your comments are the ones that exhaust me the most. I am amazed that you claim there are “many cases” of BIID cured through psychiatry. Please direct me to relevant evidence of so. I *am* interested, and I have done enough research and speaking to enough individuals with BIID for the last 15 years that I would have thought I’d have encountered them, or heard of them. As for my comments that the medical profession should be consulted if you have BIID, yes, but I think you misrepresented (or misunderstood) the context in wich I made that comment. I do think that if someone thinks they have BIID, they ought to seek assistance from the medical profession, to sort out if what they have is indeed BIID. Problem being of course that the medical profession has NO F**** clue, and wouldn’t know BIID from BDD if it hit them in the face. This is not helped by the fact that BIID has not been included in the DSM (although that might change with the DSM V due for publication in 2010). And even if the shrink the individual goes to for help has heard of BIID, there really isn’t much that can be done. If there was a psychological or psychiatric cure available, or even a medication based one, I think I’d have been “cured” a long time ago.
FWIW, the main editor of the DSM, Dr. Michael First, is continuing study on BIID and appears to agree that there is no real, consistant, non-surgical solution. There may be people out there who “beat” BIID without getting the needed impairment, but they are the exception more than the norm.
@ moddoctor. Yes, I agree with you, it would be best if we had treatment protocols similar to what is in place for GID. It would be MUCH better. People would not tend to resort to self-injury, or to black market surgeons, risking their lives. In fact, I wrote about that and you can see it here:
http://biid-info.org/Treatment_Protocol
@ Mike. There is debate about what the “origin” of BIID is. Some say it is neurological, some say it is psychological. Some say it’s a neuropsychological condition. VS Ramachandran, a noted neurologist is currently studying BIID to see if it is indeed neurological. But then, they also say that in the near future, we’ll find out that everything psychological is in fact (also) neurological. Regardless of *what* it is, the fact is, surgery/injury works. Perhaps there’s a less invasive solution ’round the corner. But that doesn’t help me, now, nor the dozen of people I’m in contact with at the moment.
@ Possessed. The woman from the Guardian is a friend, and nearly two years post amputation is very happy. Her only regret is to not have lost the leg sooner.
FWIW, I have a problem with the concept of BIID related self-injury as an extreme body modification. I think that a major difference is one of “choice”. Arguably, most people into Bodmod have a choice, they do this because they want to, or have a statement to make. Those of us with BIID don’t have a choice. Just like transsexuals don’t have a choice. You can repress it, you can ignore it, you can “dislodge” the need for short periods of time, but it keeps coming back. until you have the impairment you need. Then, you’re finally free to get on with life.
The only thing stopping me from becoming paralysed is that I am unable to do the procedure on myself. If I had access to someone with the skills and knowledge to do an intrathecal injection, I would go ahead, without looking back. But self injection in the spinal cord is not practicable.
I read the interview with interest, and the comments with both interest and an intense feeling of exhaustion. I am an individual who has BIID (to answer one question, it is Body Integrity Identity Disorder, yes, 2 “I”). I need to be paraplegic, and have been living 100% of my life as a wheelchair user. I am the owner of http://transabled.org which has been quoted here a few times. I also have put together a community wiki that has collected all the known academic and medical publishing about BIID on http://biid-info.org .
A few things.
@ Jamie and others. There is a significant difference between BIID and anorexia. Anorexia is a form of Body Dysmorphic Disorder. Please forgive me if I simplify the condition 🙂 In my understanding (based on a lot of medical paper reading), people who have BDD tend to think that their body is not “normal”, and seek to make it normal. People with BIID know their body is “normal”, but don’t fit in their body. BIID is much closer to GID than to BIID.
@ Giles. I must admit, your comments are the ones that exhaust me the most. I am amazed that you claim there are “many cases” of BIID cured through psychiatry. Please direct me to relevant evidence of so. I *am* interested, and I have done enough research and speaking to enough individuals with BIID for the last 15 years that I would have thought I’d have encountered them, or heard of them. As for my comments that the medical profession should be consulted if you have BIID, yes, but I think you misrepresented (or misunderstood) the context in wich I made that comment. I do think that if someone thinks they have BIID, they ought to seek assistance from the medical profession, to sort out if what they have is indeed BIID. Problem being of course that the medical profession has NO F**** clue, and wouldn’t know BIID from BDD if it hit them in the face. This is not helped by the fact that BIID has not been included in the DSM (although that might change with the DSM V due for publication in 2010). And even if the shrink the individual goes to for help has heard of BIID, there really isn’t much that can be done. If there was a psychological or psychiatric cure available, or even a medication based one, I think I’d have been “cured” a long time ago.
FWIW, the main editor of the DSM, Dr. Michael First, is continuing study on BIID and appears to agree that there is no real, consistant, non-surgical solution. There may be people out there who “beat” BIID without getting the needed impairment, but they are the exception more than the norm.
@ moddoctor. Yes, I agree with you, it would be best if we had treatment protocols similar to what is in place for GID. It would be MUCH better. People would not tend to resort to self-injury, or to black market surgeons, risking their lives. In fact, I wrote about that and you can see it here:
http://biid-info.org/Treatment_Protocol
@ Mike. There is debate about what the “origin” of BIID is. Some say it is neurological, some say it is psychological. Some say it’s a neuropsychological condition. VS Ramachandran, a noted neurologist is currently studying BIID to see if it is indeed neurological. But then, they also say that in the near future, we’ll find out that everything psychological is in fact (also) neurological. Regardless of *what* it is, the fact is, surgery/injury works. Perhaps there’s a less invasive solution ’round the corner. But that doesn’t help me, now, nor the dozen of people I’m in contact with at the moment.
@ Possessed. The woman from the Guardian is a friend, and nearly two years post amputation is very happy. Her only regret is to not have lost the leg sooner.
FWIW, I have a problem with the concept of BIID related self-injury as an extreme body modification. I think that a major difference is one of “choice”. Arguably, most people into Bodmod have a choice, they do this because they want to, or have a statement to make. Those of us with BIID don’t have a choice. Just like transsexuals don’t have a choice. You can repress it, you can ignore it, you can “dislodge” the need for short periods of time, but it keeps coming back. until you have the impairment you need. Then, you’re finally free to get on with life.
The only thing stopping me from becoming paralysed is that I am unable to do the procedure on myself. If I had access to someone with the skills and knowledge to do an intrathecal injection, I would go ahead, without looking back. But self injection in the spinal cord is not practicable.
Thanks for commenting Sean!
Thanks for commenting Sean!
I “did” my hand some 30 years ago on a table saw because I wanted to be a “one hander,” Just as Jason did.
I have several friends around the US who also “did” their hands. It’s not as common as one might think, because such a deed can’t be openly admitted.
I told my story in a book, “Loosing a hand” (out of print) and gave copies to close friends. All were generally accepting of me except for one woman who lost her leg in an accident. She couldn’t understand how one could ever want to do this on purpose. It took about a year for her to become friends again.
I can understand her reaction. I think I’d react the same way myself, except that I feel I also had BIID which is difficult to explain but it sure does exist.
I have not had any regrets whatsoever about doing my hand. Another close friend who did it in another part of this country is also very happy about his doing it. Before he did his, he asked me many questions. I was always very careful to make statements which wouldn’t persuade him in any way to do it. It had to be his own decision.
I’ve since talked to several who wanted to do it, but couldn’t because of fear of hurting others, not themselves. It’s a difficult decision because of the negative stigma surrounding such an act.
(picture of “deed” submitted)
I “did” my hand some 30 years ago on a table saw because I wanted to be a “one hander,” Just as Jason did.
I have several friends around the US who also “did” their hands. It’s not as common as one might think, because such a deed can’t be openly admitted.
I told my story in a book, “Loosing a hand” (out of print) and gave copies to close friends. All were generally accepting of me except for one woman who lost her leg in an accident. She couldn’t understand how one could ever want to do this on purpose. It took about a year for her to become friends again.
I can understand her reaction. I think I’d react the same way myself, except that I feel I also had BIID which is difficult to explain but it sure does exist.
I have not had any regrets whatsoever about doing my hand. Another close friend who did it in another part of this country is also very happy about his doing it. Before he did his, he asked me many questions. I was always very careful to make statements which wouldn’t persuade him in any way to do it. It had to be his own decision.
I’ve since talked to several who wanted to do it, but couldn’t because of fear of hurting others, not themselves. It’s a difficult decision because of the negative stigma surrounding such an act.
(picture of “deed” submitted)
I’m slightly surprised that no-one who’s commented thus far has openly said they suffered from GID. Well, I did. I can see the strong case for BIID people to go through a period of ‘practicing’, because being granted the surgery to have one’s private parts remodelled isn’t reversible either. It wasn’t all that long ago that someone wanting surgery to sex change could be considered insane; not, I admit, that it’s accepted universally even now.
While GID people will out of survival present themselves to the world as best they can in the gender role they believe themselves to be, it’s still pretending, and for a proportion of those people the surgery is the only way forwards because the belief is so deeply rooted. I imagine BIID people will also try to gain real life experience of the end result before committing themselves, but as far as they’re concerned it can be as simple a decision as to live or die trying; one simply cannot function day to day.
I suffered from GID for 15 years, of which five were spent ‘practicing’ my future. It took another five years to jump through all the hoops before my surgery. My life in some respects is unchanged, because I have the same interests and even some of the same friends, and while I will never be able to have children, something that saddened me greatly but which I accepted, my life ever since then has been immeasurably better than that which I left behind.
When BIID can be discussed amongst the individual’s family and friends, it will still never be easy. I recognise the casual tone Jason used in his interview, and it’s not flippancy: it’s a direct post-op effect of one having attained a correction so well-matched to one’s psyche that it’s very difficult to remember the previous form.
I’m slightly surprised that no-one who’s commented thus far has openly said they suffered from GID. Well, I did. I can see the strong case for BIID people to go through a period of ‘practicing’, because being granted the surgery to have one’s private parts remodelled isn’t reversible either. It wasn’t all that long ago that someone wanting surgery to sex change could be considered insane; not, I admit, that it’s accepted universally even now.
While GID people will out of survival present themselves to the world as best they can in the gender role they believe themselves to be, it’s still pretending, and for a proportion of those people the surgery is the only way forwards because the belief is so deeply rooted. I imagine BIID people will also try to gain real life experience of the end result before committing themselves, but as far as they’re concerned it can be as simple a decision as to live or die trying; one simply cannot function day to day.
I suffered from GID for 15 years, of which five were spent ‘practicing’ my future. It took another five years to jump through all the hoops before my surgery. My life in some respects is unchanged, because I have the same interests and even some of the same friends, and while I will never be able to have children, something that saddened me greatly but which I accepted, my life ever since then has been immeasurably better than that which I left behind.
When BIID can be discussed amongst the individual’s family and friends, it will still never be easy. I recognise the casual tone Jason used in his interview, and it’s not flippancy: it’s a direct post-op effect of one having attained a correction so well-matched to one’s psyche that it’s very difficult to remember the previous form.
Some more food for thoughts…
Dr. Nikki Sullivan writes in the abstract of her paper Integrity, Mayhem, and the Question of Self Demand Amputation:
“…at present, in the United States alone, over 1,000,000 circumcisions, 200,000 breast modifications procedures, and 800-1,000 male to female sex reassignment surgeries are performed annyually. Up to 117,000 peopel undergo abdominoplasty; 384,00 undergo liposuction; and approximately one or two in every 1,000 babies born receives surgery to ‘normalize’ genital appearance In short, the modification of bodies is prolific in contemporary Western culture and a significant number of modificatory procedures involves the removal of ‘healthy’ tissue or body parts. The obvious question this raises is why self-demand amputation is pathologized when qualitatively similar procedures are condoned….”
http://biid-info.org/Integrity%2C_Mayhem%2C_and_the_Question_of_Self-demand_Amputation
Dr. John Jordan in the abstract of his paper “The rethorical limits of the plastic body”:
“…The contemporary industry has constructed a popular image of plastic surgery as a readily available and personally empowering means to resolve body image issues, on the presumption that any body can become a “better” body. The ideology underlying the industry emerges out of analysis of the rhetoric of surgeons and patients. The rhetorical efforts of amputee “wannabes,”who seek elective amputation and who use arguments similar to those of mainstream plastic surgery applicants, reveal the paradoxes and contradictions in decision-making about who has access to these procedures. The essay concludes that the concept of the plastic body is based less on medical technology and skill than on rhetorical power…”
http://biid-info.org/The_Rhetorical_Limits_of_the_%22Plastic_Body%22
So why is it that those of us that desire an amputation or paralysed legs are told “go seek help from the shrink”? but those of you that want more “mundane” things done, like penis piercing are given the address of a practitioner doing these things?
Some more food for thoughts…
Dr. Nikki Sullivan writes in the abstract of her paper Integrity, Mayhem, and the Question of Self Demand Amputation:
“…at present, in the United States alone, over 1,000,000 circumcisions, 200,000 breast modifications procedures, and 800-1,000 male to female sex reassignment surgeries are performed annyually. Up to 117,000 peopel undergo abdominoplasty; 384,00 undergo liposuction; and approximately one or two in every 1,000 babies born receives surgery to ‘normalize’ genital appearance In short, the modification of bodies is prolific in contemporary Western culture and a significant number of modificatory procedures involves the removal of ‘healthy’ tissue or body parts. The obvious question this raises is why self-demand amputation is pathologized when qualitatively similar procedures are condoned….”
http://biid-info.org/Integrity%2C_Mayhem%2C_and_the_Question_of_Self-demand_Amputation
Dr. John Jordan in the abstract of his paper “The rethorical limits of the plastic body”:
“…The contemporary industry has constructed a popular image of plastic surgery as a readily available and personally empowering means to resolve body image issues, on the presumption that any body can become a “better” body. The ideology underlying the industry emerges out of analysis of the rhetoric of surgeons and patients. The rhetorical efforts of amputee “wannabes,”who seek elective amputation and who use arguments similar to those of mainstream plastic surgery applicants, reveal the paradoxes and contradictions in decision-making about who has access to these procedures. The essay concludes that the concept of the plastic body is based less on medical technology and skill than on rhetorical power…”
http://biid-info.org/The_Rhetorical_Limits_of_the_%22Plastic_Body%22
So why is it that those of us that desire an amputation or paralysed legs are told “go seek help from the shrink”? but those of you that want more “mundane” things done, like penis piercing are given the address of a practitioner doing these things?
Good article and discussions. I only have a few points to offer. First, I believe there are a significant number of voluntary amputees out there. I say this based upon the number that I am aware of. What is a significant number? I’d venture to guess perhaps several thousand or more in the U.S. Secondly, there is (as alluded to earlier I believe) a crossover between voluntary amputees and devotees (admirers of amputees). Finally, notwithstanding the comments here to the contrary, there are many who take ‘secrets’ to the grave in order to protect others and perhaps themselves as well. It is perhaps more common in mature or older individuals, and is not so much a child to parent issue although it could be a parent to child issue. Think of those who have never shared their experiences in war for whatever the reason. It might be nice to be able to share, but sometimes it’s not the best for all concerned.
Just my thoughts. Thanks Shannon.
Good article and discussions. I only have a few points to offer. First, I believe there are a significant number of voluntary amputees out there. I say this based upon the number that I am aware of. What is a significant number? I’d venture to guess perhaps several thousand or more in the U.S. Secondly, there is (as alluded to earlier I believe) a crossover between voluntary amputees and devotees (admirers of amputees). Finally, notwithstanding the comments here to the contrary, there are many who take ‘secrets’ to the grave in order to protect others and perhaps themselves as well. It is perhaps more common in mature or older individuals, and is not so much a child to parent issue although it could be a parent to child issue. Think of those who have never shared their experiences in war for whatever the reason. It might be nice to be able to share, but sometimes it’s not the best for all concerned.
Just my thoughts. Thanks Shannon.
Well after a friend gave me the link to this interview I expected to read a lot of negative comments but I’m suprised!! As a voluntary amputee it’s nice to know there are people, who don’t have BIID, say good things. But I don’t agree that someone can “overcome” this desire simply by going to a phsyc. I’m a perfectly normal person and I didn’t put anyone at harm when I did what I did. J
Well after a friend gave me the link to this interview I expected to read a lot of negative comments but I’m suprised!! As a voluntary amputee it’s nice to know there are people, who don’t have BIID, say good things. But I don’t agree that someone can “overcome” this desire simply by going to a phsyc. I’m a perfectly normal person and I didn’t put anyone at harm when I did what I did. J
I hope nothing happens to the remaining hand……..
I hope nothing happens to the remaining hand……..
I recently asked my psychologist about BIID. He actually has worked with quite a few people suffering from it; he was surprised that I asked. He thought I knew another client of his. Either way, he says that all of his patients ended up deciding against amputating, and 5/6 are still seeing him.
I know this in no way changes anything about how some people deal with it, but I thought it was a little odd for you to assume that something like anorexia nervosa is never born into you when you assume that BIID is.
Complex psychological disorders involving body images aren’t always implications from the media, which is something I know you understand, Shannon.
I recently asked my psychologist about BIID. He actually has worked with quite a few people suffering from it; he was surprised that I asked. He thought I knew another client of his. Either way, he says that all of his patients ended up deciding against amputating, and 5/6 are still seeing him.
I know this in no way changes anything about how some people deal with it, but I thought it was a little odd for you to assume that something like anorexia nervosa is never born into you when you assume that BIID is.
Complex psychological disorders involving body images aren’t always implications from the media, which is something I know you understand, Shannon.
In general, I think it’s real cool that the interview got some ideas flowing. I’m real thankful for all the sweet wishes. You don’t know how it feels to read those. Makes me feel like this is a real loving community. But……
I just saw the post from Bettie [119] and it bugged me. Not just her’s but several other’s have been putting out facts and figures without complete context and opinions that just raise more questions. For example, she states that her psychologist told her that he has seen “many” patients with BIID and claims a 100% success rate with regard to avoiding amputation (at least in 5/6 of the patients who are still under his/her care…We aren’t told if there’s been follow up on the other 1/6 to see if they had an “accident”.) How many of this “many” number even desire amputation, since BIID also includes people who feel like they should be blind, paraplegic, and other non-amputee conditions? Isn’t it a bit unethical to be talking about this to another patient anyway? Is this psychologist just a regular general practitioner, or some sort of specialist concentrating on cases like BIID? Cuz, if they’re a regular GP, and there’s many general psychologists out there, and if they all have “many” BIID patients, and only a fraction of people with BIID would seek out a shrink, that would sorta imply that there are millions of BIID sufferers in the U.S. alone.
Sean O’Connor [110] has written a real clear explanation of treatment options for transability/BIID at http://biid-info.org/Treatment_Protocol In it, he says the BIID can’t be cured, but he describes four possible treatments…medication, psychotherapy, pretending, and amputation. OK, during my experiment time, I tried pretending, using a homemade hook which worked like a real one, and also binding up my hand. I got comfortable with those, figured out how to do things, was reassured about going ahead with my amp. I’d recommend that, though, yeah, it is kinda deceitful.
And what about psychotherapy?…He says that psychiatry can reduce (not cure) a person’s drive to need amputation. I suppose it depends on a person’s willingness to be talked out of it then, i.e., doubt about whether they need it. Are they even really suffering from BIID then, or maybe just “me-too-ism”? If I had known that counseling could let a BIID sufferer try to make peace with it, with an option for surgery if that failed, I might have tried it, but that’s certainly not common knowledge, especially for isolated BIID sufferers. After all, isolation is a huge aspect of the condition, most people thinking they’re the only one on earth for a good part of their life.
I guess medication would require being counseled by a psychotherapist. Mr. O’Connor reported not having success with meds in his own case, but said it might be useful in helping to understand the condition or with depression leading to transability. (I hope I’ve got that right.)
Surgery being an option? Bettie, Giles and others seem to be totally against this. Except to clean up after an “accident”, is it an option anyway? As far as I know, the common knowledge is that surgery’s not available for BIID, except in Southeast Asia, maybe. There are stories on the web about people who paid a surgeon in a foreign country piles of money, only to die of infection soon after. Are those rare exceptions, or common? If it is available in your friendly, safe, local hospital, why is that fact being hidden? Cuz, if people think it’s not an option, like I did, then isn’t that a major deterrant to keep folks, who feel like they need this at all costs, from going to a counselor?
Are either counseling or amputation options covered by insurance or other means, or will it cost an arm and a leg to save an arm or a leg? This is not just a condition of the wealthy.
Right now, I’ve got emails from people who way want an amputation. Like I said in the interview, no way will I advise them to do it, but it would be real cool if there were options I could give them to ease their torment. I feel like all I can do now is just to tell how it’s going for me, and lay out the conflicting claims I’m hearing. Just for the record, three years out, I’m still loving life as an amputee.
Jason
In general, I think it’s real cool that the interview got some ideas flowing. I’m real thankful for all the sweet wishes. You don’t know how it feels to read those. Makes me feel like this is a real loving community. But……
I just saw the post from Bettie [119] and it bugged me. Not just her’s but several other’s have been putting out facts and figures without complete context and opinions that just raise more questions. For example, she states that her psychologist told her that he has seen “many” patients with BIID and claims a 100% success rate with regard to avoiding amputation (at least in 5/6 of the patients who are still under his/her care…We aren’t told if there’s been follow up on the other 1/6 to see if they had an “accident”.) How many of this “many” number even desire amputation, since BIID also includes people who feel like they should be blind, paraplegic, and other non-amputee conditions? Isn’t it a bit unethical to be talking about this to another patient anyway? Is this psychologist just a regular general practitioner, or some sort of specialist concentrating on cases like BIID? Cuz, if they’re a regular GP, and there’s many general psychologists out there, and if they all have “many” BIID patients, and only a fraction of people with BIID would seek out a shrink, that would sorta imply that there are millions of BIID sufferers in the U.S. alone.
Sean O’Connor [110] has written a real clear explanation of treatment options for transability/BIID at http://biid-info.org/Treatment_Protocol In it, he says the BIID can’t be cured, but he describes four possible treatments…medication, psychotherapy, pretending, and amputation. OK, during my experiment time, I tried pretending, using a homemade hook which worked like a real one, and also binding up my hand. I got comfortable with those, figured out how to do things, was reassured about going ahead with my amp. I’d recommend that, though, yeah, it is kinda deceitful.
And what about psychotherapy?…He says that psychiatry can reduce (not cure) a person’s drive to need amputation. I suppose it depends on a person’s willingness to be talked out of it then, i.e., doubt about whether they need it. Are they even really suffering from BIID then, or maybe just “me-too-ism”? If I had known that counseling could let a BIID sufferer try to make peace with it, with an option for surgery if that failed, I might have tried it, but that’s certainly not common knowledge, especially for isolated BIID sufferers. After all, isolation is a huge aspect of the condition, most people thinking they’re the only one on earth for a good part of their life.
I guess medication would require being counseled by a psychotherapist. Mr. O’Connor reported not having success with meds in his own case, but said it might be useful in helping to understand the condition or with depression leading to transability. (I hope I’ve got that right.)
Surgery being an option? Bettie, Giles and others seem to be totally against this. Except to clean up after an “accident”, is it an option anyway? As far as I know, the common knowledge is that surgery’s not available for BIID, except in Southeast Asia, maybe. There are stories on the web about people who paid a surgeon in a foreign country piles of money, only to die of infection soon after. Are those rare exceptions, or common? If it is available in your friendly, safe, local hospital, why is that fact being hidden? Cuz, if people think it’s not an option, like I did, then isn’t that a major deterrant to keep folks, who feel like they need this at all costs, from going to a counselor?
Are either counseling or amputation options covered by insurance or other means, or will it cost an arm and a leg to save an arm or a leg? This is not just a condition of the wealthy.
Right now, I’ve got emails from people who way want an amputation. Like I said in the interview, no way will I advise them to do it, but it would be real cool if there were options I could give them to ease their torment. I feel like all I can do now is just to tell how it’s going for me, and lay out the conflicting claims I’m hearing. Just for the record, three years out, I’m still loving life as an amputee.
Jason
@Sean O’Connor # 110
not to be an ass, but anorexia seems to not be thought a form of BDD at present. technically BDD can only be diagnosed (according to the DSM-IV definition) if first eating disorders are ruled out. but since BDD often sees co-morbidity with eating disorders, OCD, and Depression, who really knows?
i agree though with your appraisal of BIID having more parallels with GID than BDD, in that GID and BIID generally appear to have better (or at least more finite, hopefully) resolution. (but i don’t really know, so take with salt)
i am glad to see that the DSM-V will be including BIID; if anorexia and BDD can get in, i would certainly think BIID should be in there, post-haste. i wouldn’t be surprised to find out that the term BIID, as it is now used, is just a blanket term covering several related afflictions. for example, it wouldn’t take much imagination to see someone with Alien Hand Syndrome possibly wanting an amputation, but for very different reasons.
@Sean O’Connor # 110
not to be an ass, but anorexia seems to not be thought a form of BDD at present. technically BDD can only be diagnosed (according to the DSM-IV definition) if first eating disorders are ruled out. but since BDD often sees co-morbidity with eating disorders, OCD, and Depression, who really knows?
i agree though with your appraisal of BIID having more parallels with GID than BDD, in that GID and BIID generally appear to have better (or at least more finite, hopefully) resolution. (but i don’t really know, so take with salt)
i am glad to see that the DSM-V will be including BIID; if anorexia and BDD can get in, i would certainly think BIID should be in there, post-haste. i wouldn’t be surprised to find out that the term BIID, as it is now used, is just a blanket term covering several related afflictions. for example, it wouldn’t take much imagination to see someone with Alien Hand Syndrome possibly wanting an amputation, but for very different reasons.
I say more power to Jason for realizing what he wanted and finding a way to get it. As Ed said, he’s not the first to do this and he won’t be the last. Keith Alexander, the lead singer with Xander and the Smoke Pockets, a Liverpool group, who is a right below the elbow amputee like Jason once said that he thought having two hands would be a great handicap. It seems to me that Jason is the one who, like Keith, ought to know what the greater handicap is. Another thirty something voluntary amp who has written about it and appeared over and over again on TV and news and is a very active speaker now makes his living as a “professional” one armed guy. He has repeatedly said that if he could somehow get his arm back that there is no way he would do it. Yes, BIID is a condition that some people have, so, shouldn’t we be more accepting of it and less judgmental about those who are willing to get what they really want regardless of the pain and danger?
I say more power to Jason for realizing what he wanted and finding a way to get it. As Ed said, he’s not the first to do this and he won’t be the last. Keith Alexander, the lead singer with Xander and the Smoke Pockets, a Liverpool group, who is a right below the elbow amputee like Jason once said that he thought having two hands would be a great handicap. It seems to me that Jason is the one who, like Keith, ought to know what the greater handicap is. Another thirty something voluntary amp who has written about it and appeared over and over again on TV and news and is a very active speaker now makes his living as a “professional” one armed guy. He has repeatedly said that if he could somehow get his arm back that there is no way he would do it. Yes, BIID is a condition that some people have, so, shouldn’t we be more accepting of it and less judgmental about those who are willing to get what they really want regardless of the pain and danger?
At first I was shocked at the idea that people exist who acutally WANT to become disabled. So I started doing some research.
I am still in dubio whether BIID is a psychological or neurological illness, I’m prone to saying ‘both’. I know a girl who’s been anorexic since as long as she can remember, so I’m guessing eating disorders, BDD and GID are partly caused by ‘wrong wiring’, but society and life events can trigger/strengthen these issues.
And since it’s currently acceptable for someone with GID to have a sexchange (after counselling and ‘pretending’ for a period of time has proven their desire to be permanent) I started to wonder why it isn’t acceptable for someone with BIID to have surgery to remove a limb, have their spine severed, their eyes damaged, whatever they feel would make them ‘as they should be’…?
And I think the most important objection here is how we view an impairment emotionally. Being disabled is seen as something you wouldn’t want to be, because we cannot understand why someone would willingly damage their otherwise healthy body… to never hear music again, see a painting, be able to feel their body, or walk…?
Because we do not have this illness, we simply cannot understand. I can’t imagine how it feels to want my body to look extremely different than it does now, or to be of the opposite sex, or disabled. But just because I don’t feel the same doesn’t mean I should deny someone to change themselves according to what they want to be.
So I think that if there is no way to cure someones obsessive desire to become impaired with medication or psychotherapy (and from what I’ve read; there isn’t untill now), BIID should be recognised as a real (neuro?)psychological disorder by the medical world and there should be a way for BIID-sufferers to go through the same procedure as GID-sufferers (counselling, ‘pretending’ to see if this is really what they want, and finally, having their dream impairment come true.)
The only real objection to this would be: is it fair to change a fully able-bodied person into someone putting a significant financial strain on society? For instance: a BIID-sufferer who wants to become paralysed will need an adjusted house, a wheelchair, maybe a live-in help… I know that someone who is paralysed by an accident would cost the state just as much, but if it is your own fully thought-out choice to become disabled, I think you should be prepared to fully bear the (financial) consequences as well.
English is not my native language so I apologise if I used non-politically correct wording etc, I tried my best 🙂
p.s and to ‘Jason’, I hope you one day find the strength and courage to tell your loved ones about your BIID, and I hope they will be understanding. It seems that (even though you did it in a dangerous and deceiving way) you did what was best to heal yourself and I applaude that. Good luck to you.
At first I was shocked at the idea that people exist who acutally WANT to become disabled. So I started doing some research.
I am still in dubio whether BIID is a psychological or neurological illness, I’m prone to saying ‘both’. I know a girl who’s been anorexic since as long as she can remember, so I’m guessing eating disorders, BDD and GID are partly caused by ‘wrong wiring’, but society and life events can trigger/strengthen these issues.
And since it’s currently acceptable for someone with GID to have a sexchange (after counselling and ‘pretending’ for a period of time has proven their desire to be permanent) I started to wonder why it isn’t acceptable for someone with BIID to have surgery to remove a limb, have their spine severed, their eyes damaged, whatever they feel would make them ‘as they should be’…?
And I think the most important objection here is how we view an impairment emotionally. Being disabled is seen as something you wouldn’t want to be, because we cannot understand why someone would willingly damage their otherwise healthy body… to never hear music again, see a painting, be able to feel their body, or walk…?
Because we do not have this illness, we simply cannot understand. I can’t imagine how it feels to want my body to look extremely different than it does now, or to be of the opposite sex, or disabled. But just because I don’t feel the same doesn’t mean I should deny someone to change themselves according to what they want to be.
So I think that if there is no way to cure someones obsessive desire to become impaired with medication or psychotherapy (and from what I’ve read; there isn’t untill now), BIID should be recognised as a real (neuro?)psychological disorder by the medical world and there should be a way for BIID-sufferers to go through the same procedure as GID-sufferers (counselling, ‘pretending’ to see if this is really what they want, and finally, having their dream impairment come true.)
The only real objection to this would be: is it fair to change a fully able-bodied person into someone putting a significant financial strain on society? For instance: a BIID-sufferer who wants to become paralysed will need an adjusted house, a wheelchair, maybe a live-in help… I know that someone who is paralysed by an accident would cost the state just as much, but if it is your own fully thought-out choice to become disabled, I think you should be prepared to fully bear the (financial) consequences as well.
English is not my native language so I apologise if I used non-politically correct wording etc, I tried my best 🙂
p.s and to ‘Jason’, I hope you one day find the strength and courage to tell your loved ones about your BIID, and I hope they will be understanding. It seems that (even though you did it in a dangerous and deceiving way) you did what was best to heal yourself and I applaude that. Good luck to you.
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cool!!!
cool!!!