Interview: On-demand amputation? Right to choose?

Can you start by telling us what body integrity dysphoria (BID) is?
It is a medical condition that was only included in the International Classification of Diseases by the World Health Organization in 2019. Its core element is a strong internal sense of dysphoria or anxiety about the incongruence in how I perceive my own body and what it actually looks like. It's not 100% comparable, but it can be likened to gender incongruence. The difference is, that BID is not tied to gender characteristics, but to a specific body part. So one can feel a mismatch with one's own leg, for example. So much so that he doesn't see it as part of his body at all and desires its removal.

What causes this condition?
It is not entirely clear, there may be more factors, as with gender dysphoria. From the biological to the social. However, even though it is now identified as a disease, it has not yet been addressed therapeutically, for example with drugs. The few cases where solutions have been successful, and which the medical community has become aware of, are people who have achieved amputation through their own efforts, which, as you might imagine, are often gruesome experiments. Some, for example, have had their limbs frostbitten to the point where amputation was then inevitable, others go and lie on train tracks. Because it seems that the only thing that really helps is amputation, which permanently removes the unwanted body part.

There´s a historic evidence about a couple of cases where patients have obtained amputation from a doctor, but otherwise such a solution is probably unthinkable, isn't it?
Yes, amputation is illegal in Europe and the United States, so we have a medical problem for which there is no official therapeutic solution. And if the solution is for people to lie under a train, that makes BID a life-threatening medical condition in my opinion. BID also opens up the question of bodily autonomy. When a person is about to undergo a routine operation, he signs all sorts of consents concerning the interference with his bodily autonomy. But if we are talking about amputation, the person who wants it is automatically disqualified from the debate.

This disqualification is addressed in a chapter in the book in which you consider whether the desire for amputation is a coercive force that limits or deprives a person of the ability to make free choices. You write: "If this desire is accepted as coercion, the individual with BID is considered to have no moral responsibility for the consequences. The intense desire for disability is considered coercion, thereby depriving the individual of autonomous decision-making, and the request for amputation is directly disqualifying." Doesn't that answer the question of whether or not amputation is a yes or no kind of question?
I build on the premise that if the desire for amputation is so strong and the person is suffering so much that it blinds his judgment, then yes, we can say that he is incapable of clear thinking and medical decision making. The BID's insistence, however, comes in waves. The question is why, in a state where BID is mildly manifested and the person is able to think clearly about his body and his needs, can't he also make decisions about them, and retain some degree of autonomy, until BID strikes full force and he is unable to think clearly and may threaten to jump out of a window or harm himself in some other way? Because these people are asking such questions.

How long have you been interested in this type of dysphoria?
I first got into BID sometime in 2012 when I was studying medical anthropology in Bologna, Italy, and was part of a multidisciplinary group of doctors, psychologists and sociologists. One of my colleagues at the time presented me with a paper on BID and I was immediately fascinated by the idea that someone might want to get rid of their own limb. So I became more interested in it and found that there was virtually no literature on it. And to this day, most of the scholarly work on BID deals with neurology or psychology. But I'm primarily a medical anthropologist, so I'm not that interested in its origin. Rather, I am concerned with the question of why, if I am considered a healthy person by other medical standards, I am not allowed to get rid of a part of my body if I am not harming anyone else by doing so. This is a fundamental question that is close to issues such as euthanasia or abortion. So as crazy as the topic of BID may seem at first glance, its overlap is significant.

How is BID defined medically? Is it a mental disorder?
No, BID is not a mental disorder in the same sense that homosexuality is not. If it was a mental disorder, it would probably necessarily affect how clearly one is able to think about one's body. To use the gender incongruence analogy again, the ultimate solution to which today is surgery. But if it was seen as a mental disorder, we would have a big problem. So we can say that BID is a problem related to the perception of one's own embodiment, or the alignment between identity and the physical body.

Is there official data on the prevalence of BID?
Very limited. In Germany, for example, Professor Erich Kasten has been researching BID extensively for years, but even so, data are scarce and no official document on prevalence exists. This under-diagnosis is due to the stigma of BID. In the past it was considered a form of paraphilia, a sexual deviation. While its perception has changed over the years, from an identity problem to today's dysphoric issue, the label of paraphilia has remained and, in the eyes of the general, as well as the professional public, body dysphoria is often associated with some type of sexual fetish. Which it is not. As a result, however, people with BID have begun to form closed communities that come together in, for example, online forums where they share DIY approaches to dealing with BID.

And then on the internet they share their advice on how to properly get your limb removed by a train?
Kind of. For example, there's a black market in amputations. In Europe, no one will just amputate your limb, so people go to the Philippines for such procedures. If they are lucky, they will come back, because the medical guarantees and protection are not so strict there. The people who carry out such procedures operate outside the official hospital structures. I got involved in these internet forums years ago and got to know these people. I recently started a project at bodyintegritydysphoria.com, which is one of the first English-language communities, to raise awareness about BID.

How does this condition manifest itself if the need is not fulfilled after the removal of the limb?
We say "condition", but I'm not sure that's the right word, because people in the BID community talk about "identity"... Anyway, it first manifests itself quite early, often in early adolescence, mainly through feelings of great discomfort and also guilt, because the person perceives themselves as healthy, but still desires the removal of a part of their body. This creates a contradiction between his inner feeling and the social expectation of what the body should look like. This then leads to a reduced quality of life. Some people try to deal with their condition by pretending to be disabled, for example by going away for a weekend and using a wheelchair, or using a device that somehow limits the functionality of a particular limb.

If we don't know what causes BID, it must be even more difficult to accurately diagnose it, let alone counter it medically, right?
Yes, especially since many doctors don't even know that there is such a thing as BID or deny its existence and claim it's just paraphilia. That's very backwards thinking about a problem that is real. While I see a gradual change towards a more comprehensive understanding of BID, there is a need to spread awareness. People with BID are affected from a biological point of view, but also from a social point of view - they have a health problem, maybe congenital, we don't know, but the people around them don't believe it or don't understand it, which leads them to resort to all sorts of dubious solutions. And even if there is a doctor who has some knowledge of BID, they still have to face the problem of amputation being a possible solution. We are faced with the question of how a procedure such as amputation could contribute positively to improving health. Even if a doctor acknowledges and understands that someone perceives their own leg as a foreign element and that they would feel better without it, they cannot simply amputate it if the leg is healthy and functional. The physiological aspect still takes precedence over the psychological one. But there's nothing wrong with that. Because if we put psychology before physiology, we open up a whole series of other questions and potential problems. What would happen, for example, if we amputated someone's leg on the basis of a wrong diagnosis?

When you have been in contact with people who have decided to deal with BID on their own and have achieved amputation, have you come across any who have regretted their decision later?
In the few official cases that can be traced in the literature, there is no mention of regret. Because once people achieve amputation, the urge goes away - they get rid of the problematic body part and the dysphoria is gone. They don't need another amputation. But yes, I have known a few people who regretted their decision. Regret can set in when there is a misdiagnosis, which is quite common. What happens if there's a new category, a condition, in the International Classification of Diseases? Firstly, doctors start to diagnose it more often, but also people start to recognise it more often, even though they may not actually have it. It may be because they have a weak sense of their own identity and are trying to identify with something. This can lead them to fit themselves more readily into a box just because it exists. It is then easier to overlook an aspect and misdiagnosis can occur, and if one then reaches the point of surgery - whether it is BID or gender dysphoria - regret will inevitably set in over time.

The fact that amputation is an irreversible procedure makes the whole discussion about BID all the more complicated, doesn't it?
Yes, and it's one of the arguments why the comparison to gender dysphoria doesn't quite hold up. In the case of gender dysphoria, there is a transformation of the body into something else - a male body into a female body or vice versa - whereas in the case of BID there is no transformation of the body, but a direct removal of its part.

We've already touched on this, but what are the most common misconceptions about BIDs?
The most common is that it is a form of paraphilia. However, the International Classification of Diseases does not indicate any sexual connection. Nor is it a form of Body Dysmorphic Disorder, which is a condition where people are convinced about some kind of defect of their body. In contrast, people with BID are aware that their leg is healthy and functional, but perceive it as foreign. Also up for debate is the entrenched physiological idea that we can only feel healthy and thrive with two arms, two legs, and so on, and that any deviation from this standard is a pathology. I should point out that I'm not trying to advocate amputations here, that's not my point. I'm just trying to point out a problem that has no easy solution. Is it better to wait until some form of therapy is available, which may be in ten years, or may be never? Or approach amputation as a possible solution? I know about people who have decided to talk about their difficulties with BID when they are in their fifties or sixties, after struggling with it all their lives...

How common is the assumption that BID is a fashion thing? You mentioned social influence as well as finding one's own identity, and body modifications, though not as radical, can be part of that process...
In my opinion, while it is not a fashion thing, fashion, or the age we´re living in, can have an influence. As I write in one of the sections of the book, we live in a postmodern age where we are under attack of images, whether on social media or on television, which we each interpret in our own way. This "image culture" strongly influences our identity, for example, in the sense that I may desire to look like someone else because I am not happy with myself. So I am constantly trying to find my own identity. However, according to the International Classification of Diseases definition, this is not the case with BID and I would agree with this based on my experience and contact with these people. Although we certainly can't rule out these influences because, as I said, we don't have a definitive answer to what causes BID, just as we don't have one to the question of what causes gender dysphoria.

In the book, you mention a contradiction between the principle of beneficence, according to which the doctor must act in accordance with the interests of the patient and do everything for his or her good, and the principle of nonmaleficence, or nonharm, which requires the doctor to prevent potential risks. As part of your work, you also conducted a survey among Czech doctors. How do they feel about this contradiction?
I do not want to generalise, but in practice a strong paternalistic approach still prevails, where the doctor is perceived as someone who knows best what is good for you. Only slowly is a more collaborative approach starting to take hold, which means that the doctor and the patient try to find an appropriate therapeutic approach together. It shouldn't be that the doctor calls the shots and the patient silently obeys, even if such an approach goes against his or her life expectations. The prevailing opinion among my pool of respondents, when faced with BID, is that if the body is physiologically functional, the head - the mind - can be fixed, and that worse than psychological discomfort is being, say, in a wheelchair. There is an overlap between disability and impairment. A disability is a socio-cultural construct, whereas an impairment means that a person lacks something. So while a person with an impairment is missing a leg, a disability means that the missing leg makes it impossible for the person to function properly. Of course, it is questionable whether it is possible to make this distinction in terms of everyday life, because someone may be missing a leg but not feel that it is limiting them in any way. He can enjoy life like anyone else, at least until he goes to the post office and finds out that there is no wheelchair access. So, although it is difficult to measure, there are implications from everyday life and there is certainly no need to patronise people with a missing limb or in a wheelchair.

Do you think that in time BID will get rid of the stigma and people affected by this condition will stop being afraid to talk about it?
First of all, I would like the professional and lay public to accept that it is a problem, not a paraphilia or a fetish, and that people with BID need real help, not condemnation. And I would also like to point out that there are gaps in how we judge human autonomy in certain medical contexts. If we recognize this, we can approach the problem in some way, whether or not amputations are the solution. Again, I remind you that I am not advocating amputations. However, some clear plan on how to approach BID therapeutically is needed.

So that people with BID can go to the doctor without fear and not have to go lie on the train tracks or undergo risky procedures in the Philippines...
Exactly. There needs to be a dialogue between the medical community, the public and people with BID that does not exist today for a number of reasons. Primarily because of stigma, but also because of ignorance in the sense that most people don't know that such a thing even exists.

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