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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Connotations of ‘Crazy’

Kesha bringing crazy sexy cool back.

Y’all knew I was gonna blog about this, yeah? A topic near and dear to my heart.

Let me start by saying that this post will only explore the implications of the word crazy. It will not look how it affects people, or the bigger, societal and or cultural meanings attached to it. There is just so much to unpack there, and well, blogs are said to average 600-1000 words max. What I want to write about here is the different ways we think about, talk about, and use the ‘crazy’ label. Because once you break it down, you can stare ignorance in the face, and knock it out (Tooo cheesy).

Crazy’ as a Compliment’

Perhaps most confusing about our understanding of ‘crazy’ is the double-meaning is encompasses. Generally, it has heavy negative implications, but every once and a while, (at least in my experience) a friend or sexfriend will pop out f the woodwork and throw you off with a “You’re nuts and I fuckin love it.”…For a minute you feel little butterflies and  sputter an “Aww, thanks,” And in your minute corner of the earth, a bond has been strengthened.

The reason you gain warm-fuzzy butterflies from a word that usually derives out of an intent to wound, is because in this context, crazy really, more accurately means: intelligent, interesting, wild, unpredictable, all of which are positives in Canadian culture. Knowingly or not, you accept the crazy label because on whatever level, you are aware of its more concise, positive implications.

‘Crazy’ as Interchangable with Mentally Ill:

These words are switched and misused so often that their differences are almost undefinable. But Crazy is not mentally ill and mentally ill is not crazy. Mental Illness has touched my family, there have been diagnosis of Bipolar and Borderline Personality Disorder, two differing disorders with overlapping symptoms. Bipolar has two types, and is most commonly known for extreme moods, mania, depression, and feelings of grandiosity which eventually turn into feelings of completely worthlessness and many times, suicidal ideation. Depending on the type and severity, mood swings and their accompanying behaviors can last anywhere from weeks to months, with the exception of rapid cycle bipolar (a subcategory of BP II, i believe), characterized by daily mood swings. As far as Borderline Personality Disorder goes, it is closely related to Bipolar, differing mainly in that there is a lack of “sense of self.”(also, Boderline is categorized in the DSM as a personality disorder, with maladaptive coping mechanisms, while Bipolar is labelled a mood disorder) As I understand it, individuals with Borderline are very malleable in personal relationships, suffer from extreme lack of boundaries, and are likely to be extremely attached to loved ones on top of having major changes in mood.

‘Crazy’ by contrast, is a shit word, completely ignorant in nature. Einstein defines its twin brother, insanity, as ‘doing the same thing over and over in hopes of different results.'(remember when that saying was bumper-sticker-popular?). Insanity has also been defined by the law in the form of Not Criminally Responsible. If I remember anything from undergrad law (uhmmmmmmmmmm……), NCR touches on the crucial elements of awareness and capacity of understanding. In sum, the law recognizes that those without awareness to control their actions cannot be held to the same standards of law.  I just Wiki’d it and found this:

“”16. (1) No person is criminally responsible for an act committed or an omission made while suffering from a mental disorder that rendered the person incapable of appreciating the nature and quality of the act or omission or of knowing that it was wrong. [4]

To establish a claim of mental disorder the party raising the issue must show on a balance of probabilities first that the person who committed the act was suffering from a “disease of the mind”, and second, that at the time of the offence they were either 1) unable to appreciate the “nature and quality” of the act, or 2) did not know it was “wrong”.”

What’s significant in this legislation is the theme of not knowing or appreciating criminal acts, which in turn defines the individual as NCR. I see this lack of awareness as essential to our understanding of insanity, and a necessary component of helping society separate mental illness and crazy/insane.

All said,  If you think that I’m making the ‘mental illness as disease’ argument, you would be right. To me, mental illness is sickness, with a set of symptoms as tangible as mucus is to a cold. Can you imagine having moods that are so intense that they dictate your thoughts and behaviours and counter better judgement? Of course, I am over simplifying, but I want to suggest that living with mental illness is extremely challenging, and the end result–even if it was also the starting point–can be ‘insanity'(loss of awareness). Ugh. The word crazy should be buried, or taken back, or transformed in some way that justifies its use. Because the more I write about it, the more I just want to blot it out of Webster’s and wash my own mouth out with soap.

So, When is ‘Crazy’ Justifiable?

Alright, if you’re still reading after all that jibber-jabber, congrats.

Here’s my mindset re: when the ‘crazy’ label is justifiable:

  • When you’re being stalked/threatened/punched/slapped etc etc etc
  • When the person cannot control, or is not aware of their own actions and their impact.

It does not work when used to describe:

  • A situation where you are not getting what you want so you call the person ‘the craziest person ever’ in hopes of ruining their day.
  • When someone is having anxiety/hurting/extremely manic/the ugly opposite of manic. Extreme behaviors are not crazy. Those feelings are real to that person.
  • behaviors you see has typically ‘girly’. Consider your situational context before you go aligning girls’ behavior with their gender.

So much for that word limit. Sorry about the overt contradictions in this post. Check out this screen shot from when I googled NCR (4th one down, Stephen Harper is NCR. ha. Sorry, not funny. Still posting it tho.):

Image

Happy Thursday.