Afternoon InquisitionFeminismScienceSkepticism

AI: Body Integrity Identity Disorder and Wanting to be Disabled

Chloe Jennings-White is a healthy, able-bodied. 58 year-old research scientist who lives part of her life in wheelchair. She lives this way not by necessity, but by choice. Chloe suffers from what is known as Body Integrity Identity Disorder. She has perfectly healthy legs and even has been known to ski, but she identifies and sees herself as a person with a disability. She wants desperately to be paralyzed. So much so, that she is actively seeking out a doctor willing to perform surgery to cut her sciatic and femoral nerves.

More on Chloe’s story can be found here.

Body Integrity Identity Disorder or BIID is rare but recognized psychiatric condition. The condition, as of this post, has not been extensively studied but the leading view is that there is a flaw in the mapping part of the brain that recognizes where parts of your body begin and end. This flaw in messaging in the brain causes the person to not recognize certain limbs or body parts as belonging to them. This can lead to great psychological stress and the desire to have what seems like foreign body parts removed. The stress can be so acute that amputation of body parts is the desired solution. Another less popular hypothesis is that the person suffering from BIID saw a person with a particular disability when they were very young or impressionable and then internalized that disabled person as being the ideal person and then wanting to become that ideal.

In Chloe’s case one or both of these possibilities seem plausible. Below is an excerpt from the interview with Cloe in the Daily Mail. (Yes, I realize The Daily Mail is the bottom of the barrel in journalism.)

Chloe first realised she was different at the age of four, after visiting her Aunt Olive, who was using leg braces after a bike accident.
‘I wanted them too,’ she said. ‘I wondered why I wasn’t born needing them and felt something was wrong with me because I didn’t have them.’

feet 2
These are not your feet.

My initial reaction to this story, after I read it, was that it would go against medical ethics to perform any surgery that would render a person disabled because you are taking a healthy person and causing them harm. But after some research into the topic and some consideration, I’m not so sure if this is the case. If the person suffering from BIID is experiencing great stress because their body is not inline with how they perceive themselves and it is affecting their quality of life in an extreme and negative way then why not let them become who they want to be? If causing the physical disability will actually relieve the psychological stress then in fact, pain may be reduced. It’s an interesting thing to consider especially when we think in terms of what makes us whole or accepted as healthy in today’s society. If we strive to be a society that acknowledges mental illness then we are going to have to learn to actually recognize and attempt to lessen the psychological anguish that comes with it.

What do you think? Is there anything wrong with choosing to be paralyzed? Should procedures such as amputation of healthy limbs be accepted by mainstream society as being a reasonable solution to psychological pain?

More on BIID can be found here.

Photos by me.

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Amy Roth

Amy Davis Roth (aka Surly Amy) is a multimedia artist who resides in Los Angeles, California. She makes Surly-Ramics. She is the fearless leader of Mad Art Lab. Support her on Patreon. Follow her on twitter: @SurlyAmy or on Google+. Tip Jar is here.

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24 Comments

  1. On the one hand, part of my brain likens it to sexual reassignment surgery, but on the other, this seems like it should be an absolute last resort after all other research and treatment options have been exhausted. What a wild story.

      1. From the little information given, and as it’s defined as a disorder, wouldn’t treatment options such as pharmaceutical, talk therapy, behavioral, etc. be preferable to promoting elective mutilation/dismemberment? I can see the argument either way; it just sits uncomfortably in my craw and I don’t well understand the complexities of BIID, having first heard of it two hours ago.

  2. This can seem like a hard one to call, but I don’t liken it to sexual reassignment surgery. It’s closer to (but not exactly like) destructive masochism or cutting, in that you are doing harm to yourself. Reassignment seeks to relieve stress by helping you discover your proper gender, and gender reassignment. The result is a perfectly functional person who is not doing harm to themselves and can perform in society and the only real problems are caused by external forces. However, in this case, this person would go from dealing with a psychological problem to a physical one. Do they really understand what that would mean? The person would have to deal with traveling in a chair and all the health consequences thereof. I don’t have all the details but my impression is that the person feels like this is simply “sitting down all the time” and it’s definitely no. We don’t allow a person who is cutting to continue to cut because they can cause serious injury to themselves. Perhaps this person would be a perfectly functional person dealing in a different world and be perfectly adjusted, or perhaps they would be under a different kind of stress and be no better off, except now they are officially handicapped and there is no way to go back. There’s no way to tell, is there? Not unless someone decided to do unethical experiments.

    True, we probably considered gender identity issues as something not worth surgery because it would “harm” them, but again those agents of harm were external, not internal, and when we recognized that, we were able to move forward ethically. I do not see any ethical grounds, yet, that a doctor would want to do this to someone.

    1. I don’t find the analogy to self-harm to be cogent because self-harm, while providing temporary relief to psychological stress, does not ultimately fix whatever feelings the harm is trying to address. Surgery for BIID, on the other hand, is a long-term solution for people who experience psychological stress because parts of their bodies feel foreign. It seems patronizing to me to think that a person hasn’t thought through the consequences of surgery for BIID, in much the same way that the biomedical establishment serves as gatekeepers for trans people wishing to transition. People say the same thing about trans people–do they understand what their transitioning will mean? Do they understand the consequences?

      I also wonder why we privilege the idea of functionality. It seems to me that just because a body part is functioning is not a sufficient reasoning for forcing a person to keep said body part if they don’t want it. The idea that functional body parts have value and non-functional body parts do not seems ableist to me.

      1. You make a good point about self harm not fixing the underlying feelings. However, you can’t make the claim that the surgery IS a long term solution, you can only say it might be. There’s no proof that it’s definite, because it’s unstudied. I agree that scientists should be the gatekeepers here, it’s just that scientists are stuck in a catch 22. Doing such surgery that could cause harm would be unethical. It’s not patronizing when no one understand the consequences. I tried not to frame my arguments in an Ableist manner. It’s not that the consequences are she has to be in a wheelchair for the rest of her life. Will the psychological condition spread to other limbs? Will the person experience deep regret? Are there better psychological treatment options? I’m talking about the internal affects on the patient, not the external forces of discrimination.

        What dives everyone nuts here is that the part that is failing here is the brain, not the legs. In software parlance, disabling the legs is a workaround. It doesn’t address the root cause. Gender reassignment actually addresses a root problem, and there are in many situations biological as well as psychological reasons for being transgendered.

        Also be careful with the functionality argument because that a slippery slope. You make a good Ableist argument but where does the functionality argument stop? Do I have the right to remove all limbs, both eyes, both ears, jaw and become a lump that has to live on life support and the goodwill of someone changing your diaper several times a day? You are now imposing your choice on someone else and it’s no longer just about your own ability. What if someone with BIID took it this far? Is that an ethical choice for the person who made it?

        1. All of that sounds an awful lot like the things people say to trans people who want to transition.

          What dives everyone nuts here is that the part that is failing here is the brain, not the legs. In software parlance, disabling the legs is a workaround. It doesn’t address the root cause.

          People are not computers or software. And I’m not sure how you can tell me that I can’t make the argument that surgery is a long-term solution, only that it might be, but then turn around and make the argument that it DOES not address the root cause rather than it MIGHT NOT address the root cause. Be consistent.

          Also be careful with the functionality argument because that a slippery slope. You make a good Ableist argument but where does the functionality argument stop? Do I have the right to remove all limbs, both eyes, both ears, jaw and become a lump that has to live on life support and the goodwill of someone changing your diaper several times a day? You are now imposing your choice on someone else and it’s no longer just about your own ability. What if someone with BIID took it this far? Is that an ethical choice for the person who made it?

          Did you seriously just make a slippery slope argument?? All of that is irrelevant until/unless it happens. If someone “took it that far,” that’s something that should be dealt with at that time, not a possibility that should therefore ban all people from seeking surgery for BIID.

  3. (I don’t really know if I’m being sufficiently sensitive in my choice of words. If I offend anyone, I sincerely apologize.)

    Would it be more reasonable to think of this as cosmetic surgery? It is addressing an issue which is not related to the immediate biological functioning of the body part in question, but relates to the broader personal wants/needs of the person? If someone has been disfigured in some way by accident or birth, they may have a perfectly functional body parts, but wish to alleviate the stress of the attention their disfigurement receives. My impression (with very little exposure to anything beyond media representations) is that there is still considerable debate about the medical ethics of cosmetic surgery, and that it is judged on a sort of sliding scale of the patient’s desires vs. how radical the therapy is.

  4. I don’t know. I’ve thought about this in the past and I think it’s something that must be thought through carefully by the person and doctor involved. I worry a doctor would not perform this surgery. Since the thought is to “do no harm” would a doctor be able to do this? Would a doctor be found liable if someone later gained guardianship and sued (in old age or in other circumstances)? Would the state have an interest in making or keeping this from going forward?

    I think there’s important underlying questions about how much a person should have control over their own body and how much they can ask other people to participate in that control. Is self-harm okay? Is this self-harm?

  5. I have not heard of this one before. It sounds a lot like Munchausen’s Syndrome to me. On the face of it,surgery would seem to be totally contrary to the Hippocratic Oath. I can see the similarity to gender reassignment surgery, but in that case there is something like 50 years of precedent to guide us. The ethical issues also seem to have something in common with the euthanasia debate (have we discussed that issue here at Skepchick yet?)

    I imagine any doctor who performed this surgery would want to be sure that his medical indemnity insurance was up to date.

    1. Yeah, I see this more in the realm of suicidal patients, too. If a patient is really suicidal, do you give them the means to end their life? Where there’s no terminal physical illness involved, but a serious psychiatric one?
      Cosmetic surgery, body modification, and GRS shouldn’t leave the patient physically disabled in any profound way. That’s apples and steamboats.

  6. Cosmetic surgery, body modification, and GRS shouldn’t leave the patient physically disabled in any profound way.

    define “shouldn’t”. would you ban extreme body mods involving e.g. penectomy?

    1. It’s complicated, isn’t it? The desire to remove a body part would fall under a BDD diagnoses, wouldn’t it?
      If suicide and self harm are pathological, so is this. Should we prevent people from harming themselves, or enabling it?
      Is it therapeutic if the patient has some psychological relief?
      If a loved one was, say, breaking their toes and claimed that broken toes made them feel better, would you give them a hammer? Should a doctor start toe-breaking treatment to make sure the toes are broken in the least damaging way?
      We’re talking about very vulnerable people with serious mental illnesses. Is penectomy the best treatment? I don’t know. Should a patient who has been relentlessly severely depressed be given the treatment option of a painless suicide? I don’t have an answer to those questions.
      The only strong opinion I have, is that I’m unqualified to have an opinion. I only know that these people are obviously suffering. I’m unconvinced that adding physical pain to psychological pain is a good thing. Although it might be the least bad thing. I don’t know.

      I’m also sharply aware of the harm turning things like this into intellectual or philosophical debates does. I know that people are complicated and emotional and vulnerable and often in a lot of pain. There aren’t any easy answers.

      1. Like I said above, I’m not sure the comparison with self-harm is useful. This is an issue with the brain not mapping a body part and therefore the body part appears foreign to the person.

        But I do agree with you, it can be tricky to discuss. Which is why I wish we could stop making comparisons and just discuss BIID. Making comparisons, while it might help us make sense of it, also can have the effect of hiding how BIID is unique and may require unique approaches to treatment/care.

        I remain unconvinced that it is unethical (metaethics, not medical ethics) to exercise bodily autonomy and voluntarily remove or alter a body part.

      2. Is penectomy the best treatment?

        “treatment”? I was talking about extreme body modification, not treatment of BDD. People are performing penectomies as body modifications the way other people e.g. split their tongues or stretch their ears or whatever. It’s a body mod, not pathological self-harm like cutting, which is self-treating a mental illness

        1. You’re talking about people cutting off their own penises. Your assertion is that they aren’t suffering from any pathology?
          We disagree.
          What (if anything) should be done about it is a different conversation, and one I’m not qualified to have.

          1. You’re talking about people cutting off their own penises. Your assertion is that they aren’t suffering from any pathology?
            We disagree.

            on what evidence do you base your assertion that they’re suffering from a psychopathology? because no, liking very extreme body mods won’t do. That’s buying into the construction of psychopathology as a label for socially unacceptable human variance.
            Do you have any evidence that people into such extreme mods are actually suffering? Or causing someone else suffering? Because without that, you’re just labeling variance as psychopathology.

            What (if anything) should be done about it is a different conversation, and one I’m not qualified to have.

            um. given a person’s right to bodily autonomy, the correct answer is “nothing”, unless they’re endangering others. O.o

  7. I would want to see at least one example of a person having the surgery (in another country for instance) and on later follow up that person was found to be substantially happier or “cured”.

    This is where the euthanasia debate is relevant. We have Dr Phillip Nitschke assisting death for patients with terminal diseases accompanied by high profile media reporting. There is a support group and mounting evidence that the patients’ wishes (to avoid prolonging life in a situation of pain and suffering) are being carried out.

    That approach seems to me to be an evidence based one, that we as skeptics could take seriously.

  8. A way to look at this might be the opposite of phantom limb pain. I don’t think that irreversible surgery would be in the patient’s best interests. Temporary paralysis could be produced through anesthetics or botox.

    1. You know, I was thinking exactly the same thing. I was wondering if a period of anaesthetic followed by withdrawal could be used to knock the nervous system back into normal function again.

  9. I’ll go with not doing surgery like this for a somewhat different reason. Call it a variant of precautionary principle.

    Gender reassignment is a pretty well-trodden area; there’s been a lot of psych study on it that seems to show it’s beneficial and at the very least does no harm. Here we have a disorder that’s not well studied and where if one were to approve such a permanent solution (paralysis) there’s no way to fix it if it turns out to be a mistake.

    So, I’d go with inducing some type of temporary paralysis maybe and see if that works. At the most. Something reversible.

    My other issue is Will’s dismissal of the “slippery slope” argument out of hand. Yeah, nobody has done what is described above, but legal systems are notoriously bad at nuance. So if we’re going to allow something like this you kind of have to ask about the stupid extreme situations because laws and such often treat these things as binaries even when they are not. So in a real – world application sense I’d say you have to ask is there anything in this kind of body-modification that is pathological, ever? Where do you draw the line? That’s why I go with the solution above as a practical matter.

    Also, while being out of the norm isn’t pathological by itself, that doesn’t mean that it is never such either. I could get brain damage in an accident and develop hallucinations that tell me I should set myself on fire, that doesn’t make it a perfectly valid reading of reality, you know? And Will’s argument does raise the question of treating suicidal patients. Why isn’t that just another form of body modification? I mean, you’re dead after, but then none of it matters to you anyway. But that’s more of an abstract discussion. Again, I’m looking at the situation in a more concrete sense.

  10. While I generally support bodily autonomy with informed consent, as a registered nurse I could never support the choice of a person who wanted to become a paraplegic. Furthermore, I strongly believe that any doctor who would perform such a surgery should not only lose their license, but face criminal charges. Despite the equality of persons with paralyzing disabilities, they are NOT equal in their health outcomes.

    I don’t know if it’s something you can truly understand until you have done a dressing change on a pressure ulcer where your arm goes in the wound until halfway up your elbow, and you could easily fit four fists in the breadth of the wound. Or until you have taken care of a person with a bowel obstruction so severe they were vomiting stool; an obstruction that was absolutely related to their paralysis. I have seen persons with urinary tract infections so frequent that the bacteria become resistant to antibiotics. And have seen the faces of their loved ones when the person goes septic from the UTI and dies.

    These are not just cases of neglect. Almost all paralyzed persons I have worked with cannot urinate on their own, and require about 3 or 4 catheterizations a day, which causes infection. They have difficulties regulating their bowel function and suffer complications. They are far more likely to get pneumonia. Despite lacking sensation in their limbs, some a plagued with constant intense neuropathic pain. A paralyzed person must shift their weight and change their position every 2 hours to prevent pressure ulcers. Even if they have access to 24-hour assistance it is difficult to achieve 100% compliance. So many times, a person will tell me they just want to be left to sleep, but 8 hours a day without a position change will literally kill them, and in a slow and miserable way.

    I remain undecided on a simple amputation in an otherwise healthy person, but I know in my heart that causing paralysis in a non-disabled person will never be the right solution.

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