Wheelie Wannabies & The Basics of Body Integrity Identity Disorder

In high-school, I had this really confusing dream that I was pregnant. Somewhat strangely, the dream didn’t focus on who the father was or how I would raise the kid, but rather the fact that I was (miraculously) pregnant, and the fact that I now walked. I woke up sweating, going over the images in my mind. In the dream, I looked down at my belly: I was wearing a green shirt, had a lovely baby belly, and was standing in the sand. I felt wonderful and free, but everyone in the dream kept asking me: “How did this happen?”. The reoccurring question got louder and more frequent, and I became anxious, not knowing whether the question referred to my walking or the thing growing inside of me.

It was the first dream that I remember (vividly) where walking was acknowledged as being different from my everyday reality. Up until then, I walked in all my dreams, without the underlying feeling that it was suspicious or wrong. It’s how I saw myself, and it made sense.

It’s in the inverse way that I’ve come to understand Body Integrity Identity Disorder (BIID), a label describing when people have a desire to be physically disabled, when in reality they are not. In the interest of better understanding all kinds of people, and putting aside misconstrued beliefs about people with BIID, I invite you to read on.

What is BIID?

BIID is a disorder in which people (most commonly) want to have amputation or paralysis, usually of their lower limbs. It most often manifests as a desire to amputate the lower left leg below the knee.Its frequency is largely unknown, as a lot of people with BIID are ashamed or even baffled by by their desires(and the stigma attached), and the disorder is rarely studied.

Why Does BIID Happen?

Within the small pool of lit that exists on BIID, it’s sometimes called a mental illness, though majority of research suggests that it is a “body mapping” disorder. The body mapping theory claims  that the part of the brain that “maps out” body movement (specifically the right Parietal Lobe) is likely malfunctioning in someone with BIID. For example, in this sensationalized videoclip, the BIID person undergoes a brain scan which shows no evidence of the effected limb existing on his brain-map. As a result of this disconnect, people with BIID often feel like their unwanted body parts are foreign objects, alien to themselves and their identity.

Take a moment and envision what this must be like. To look down, and see a body part that doesn’t connect with who you are. The closest (and probably most pathetic) link I can make for us non-BIIDs is that feeling of chilling-fear you get when your hand has fallen into a numb pins-and-needles sleep and it feels so dead that for a minute you can’t move it. It just lays there, useless, and your only thought is “it’s like this isn’t even my hand.”…

Someone who identifies as having BIID was willing to chat with me, and agreed with a link I drew between Phantom Limb Syndrome and BIID. PLS is a much more commonly understood syndrome, in which people physically mourn the loss of limbs. I stayed in a hospital with a bunch of post-op amputees when I was 19, and almost all of them would complain about pain in their legs and feet–the legs and feet which had been taken from them, for whatever reason. The two syndromes are comparable in that they both display symptoms which do not allign with reality; one feels the pain of a limb lost, while the other grieves its existence.

If for no other reason, I believe BIID should be discussed simply because of how emotionally taxing it is on those it effects, as well as their friends and family.I have read post upon post of people discussing the emotional toll this incongruency takes on them, and have heard stories of people self-mutilating/amputating, freezing (as is seen in the above clip) and even shooting themselves in the foot to make their body match their perception.And this isn’t the half of it–there are medical costs and soiled relationships and accessibility issues to contend with, on top of having to prove the legitimacy of your desires to everyone you know. It’s high time we stopped challenging BIID suffers and started listening.

The Social Side of BIID:

When I first started asking questions about BIID, I wondered if there was a link between helplessness, or wanting to be babied, or a desire to be dependent on others. What I found was a pretty hard, “No.” People with this circumstance do not generally crave the social atmosphere that inevitably accompanies disability–many admit that this is one of the most difficult things to deal with, when thinking about becoming disabled. But it isn’t about envying how disabled people are treated. It’s usually not about wanting the wheelchair. It’s about ridding oneself of parts they feel don’t belong.

My main hope is that everyone can stop being afraid of what we don’t understand. Frankly, there’s nothing to fear–If the manual for your body doesn’t tell you that you have lower extremities, it’s only logical that you want them gone, just as it’s logical for me and my fully functioning body map to want the able bodiedness I see as normal. BIID has nothing to do with disability, and everything to do with matching one’s body with the way they see themselves.

As always, there is more to discuss here, like the terminology used to describe people with BIID, the links (some exist, but not always, and not formally) between BIID and Devoteeism, and the general ethical issues which further stigmatize many with BIID–but I’m out of space. Next time, perhaps.

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2 Comments

  1. “BIID has nothing to do with disability, and everything to do with matching ones body with the image they see of themselves”

    Kirsten, in that one sentence you’ve captured the essence of BIID. Thank you for writing this post, with all of the misinformation online and opinion based on that misinformation it is refreshing to read a piece from someone who has taken the time to research the topic and present it in a non-judgemental form.

    You have the appreciation of this person with BIID. Looking forward to reading future posts on the topic.

    Andy

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