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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#DisabilityPrivilege

For all my bitching about disability struggles, I could stand to blog a bit about disability privilege. No, I’m not talking about getting the parking spot closest to the mall door, or front row seats at movies(though those are definite situational perks), I mean the different ways in which different physical disabilities dictate how we are seen by others. Here, I’ve arranged these in a chart, because, easy:

Societal Hierarchy Of Disability

 disabilityhierarchy

Before everybody goes ape snatch over my essentialist pyramid, allow me to make a cluster of disclaimers. Firstly, I made this up, just now…like everything I post here, unless otherwise sourced. Secondly, I am acutely aware of the troubling affects of generalizations, and issues around defining words like “slight,”I use this for definitive purposes only. Thirdly, acquired disability (caused usually by injury or accident, not from birth), can be worse physically than many Forever Disabilities (I term I came up with, to describe disabilities had since birth, that are never ever ever going away) but I think societal approaches to acquired disability are a little less condescending, which I’ll discuss. Quatro: This post will only address social views of disabilities, and how certain attitudinal changes happen with different disabilities. It is NOT (Never! Not at all!) a reflection of the disabilities themselves or the people that live with them. This pyramid is to meant to raise questions, bring about brain synapses, and maybe start mouths flapping. Let’s talk about it.

Claiming Personal Privilege

Of course, my vantage point as a person in the second -to-bottom category brings about an inescapable personal bias—and that’s also where a lot of my privilege comes in. So let me disclose quickly, in the interest of fully “claiming” privilege. I’m a white girl, who lives in Canada, and doesn’t need to have her parents help her with personal care. I’m mildly conventionally attractive (Thin? Nice teeth? Apparently I’m also conceited.), and I have full verbal capacities. I’m also educated and have part time employment at my disposal. I’m pretty damn privileged.

CP Privilege,

Since Cerebral Palsy is my story, I’ll use it as a starting point. Ever since undergrad, my friend Andrew and I have titled our type CP the “jackpot” of disabilities. It’s not, actually, we were ignorant fools in undergrad (ok well, at least I was). But there are a few positives to this disability as I experience it:

  • Some of the symptoms of CP, such as rigidity and muscle spasms, can be improved through therapy. If therapy is maintained (hah. No.) then your ability level can increase a fair amount, relative to how you define fair and the severity of your CP. It’s like Choose Your Own Adventure for disabled fitness.
  • People often think you’re paralyzed. Again, limited to my type of CP, which is experienced mainly in my legs, but not actually, it just takes a while longer to notice the other weird spasms happening everywhere. Keep in mind that I have “full” mental capabilities and am markedly free of speech-impediment. As such, I often “pass” as someone who used to be able, but no longer is. This is great while it lasts, as most people don’t question your intelligence when they think you once walked. Which brings me to…

Acquired Disability Privilege

I can only tell you what I know from being mistaken as paraplegic. A few years ago a coworker of mine approached me, saying he had a personal question. He sat down, slouched comfortably in front of me and said, “You take really good care of yourself and you seem to like it here. You’re always pleasant, but I…” He trailed off.

Anticipating his question I said, “You won’t offend me, just ask.” (OOPS, YOU’RE IN MY BLOG.) He laughed nervously and then said, “You’re accident must’ve been hard to deal with.”

I smiled and explained that I wasn’t paralyzed, but that depriving my brain of oxygen at birth was probably pretty rough. I told him I was born too early, that my brain had taken the bulk of it, and that brain damage was the result. In the milliseconds that followed, I watched him go from confused, to understanding, back to confused, to generally awkward. He shifted in his seat and said the ever-famous, “But you’re sharp…and good at your job.” When people say this, I have half-a-mind to punch them, but they mean no harm, and some people that have CP are affected intellectually, so a simple, “my intellect is intact” is usually all they get.

Point is, in finding out I didn’t used to walk, this guy started doubting my intellect, and my capabilities. It no longer made sense to him that I could excel without having been a walkie. And in a way, that’s acquired disability privilege.

Severe, Purely Physical Forever Disability Privilege

Say what? I see this newly-made-up category as those people that have severe physical disabilities, from birth to beyond. Generally, when society finishes treating them as a tragedy (as is sometimes incurred with many and most physical disabilities), they can then move on to doing whatever they do, without questions about intelligence, because their disability is purely physical.

I’m stopping there, because I don’t fit this category, and writing as if I know a damned thing is causing me to break into a nervous sweat. I do not want to minimize other barriers that those failing into this category may face, only to mention that when your disability is “purely physical” (as mine is not) I should hope that people don’t constantly question your noodle’s capacity. Noodle.

And here lies the end of this likely offensive post. If you take nothing else away from this, I hope to stir your mental cauldron on how different disabilities are received and perceived. Thoughts welcome.

How The Disability Blame-Game Works

Having a distinctive trait that separates you from “normal” can easily become a go-to excuse for all of life’s problems. When that trait is living with a disability, it can soon mean that nearly everything is fair game to be blamed on physical impairment. Much of this blame may be legitimate, like “Oh, I can’t go to your house because you have stairs, no strong people to carry me, and you’re just another jerk who won’t build a ramp.” Or, “Oh, no, little child who wants to play in my wheelchair, you can’t because I actually can’t get up”

These physical/spacial barriers in life (stairs, small spaces, hilly places, inaccessible bathrooms, secret coves) are the easiest to pin-down as #disability problems, but from there on in things get a little messy. As a wheelie, I have time-and-time again asked myself “Is this me, or my disability?” usually pertaining to issues of employment, schooling, friendships, sexships, everything ever. It’s a burning question, and is always sitting comfortably in the back of my mind.Here’s a breakdown of ways disability can bare the brunt of blame for issues other than physical blockades. Keep in mind that this blog is based mainly on my experience and the experiences of other disabled people who have been kind enough to share their thoughts with me.

Jobs/ Job Problems:

Negative internalizations about disability are a real bitch. In the realm of employment, if you get a job, you often wonder if you only got it because the company had to fill their disability quota. If you don’t get the job, you might wonder if it’s because the company didn’t want to take-on whatever accommodations you may require–be it more office space or general awareness of your disability issues.

Either way, if you’re accepted or rejected in the employment world, it’s almost impossible to figure out what’s your fault as a person and what’s an unchangeable result stemming from your disabled status.

Another thing encountered in the work environment is genuine surprise when you complete a task well. This is not meant to bash anyone, but sometimes I think people are unwittingly baffled when disabled people are actually being useful, as it doesn’t fit with engrained stereotypes, and our perma-spot as the “needy wheelie”. When this happens, it causes the PwD to question themselves in a “Did they expect me to fail?” way. It also plants doubt about whether compliments are genuine, like, “Did I do good by human standards, or wheelie ones?”(which are inevitably lower, since your life is harder—we expect less of you, don’t worry).

If you take disability out of the equation, it’s a little bit easier to breath. When you get rejected, it’s because you weren’t qualified, or your bedside manner sucks, or you blew the interview, like the fool that you are. All of these reasons are manageable things that can be improved upon/changed. Disability not so much.

Relationships:

I feel bad about addressing this, because I write about it often, and also because I suspect I’d be nearly as awful at friendships and relationships if I were able-bodied. The questions around social relations with others revolve (again) around not knowing whether your excluded because of your disability or your personality. I only went to one high-school party in my entire 4 years, and the whole time I was beyond baffled that I had even been invited. Sometime during my high-school period, I had 2 child-like high-school “relationships”, who I thought of as: “people who liked to look at me, laugh at my jokes, and make me terribly squeamish by holding my hand”.  Clearly, thriving in the social world was not my thing, and while I was well-liked, I was never really accepted.

It remains a mystery how much disability has contributed to my social troubles. My inability to achieve peer acceptance could be two parts Kristen’s really fucking intense and one part I’m disabled, how does socializing happen? In truth, I just don’t know what’s what, and it’s really tough to know when I need to take on the task of self improvement.

I originally wrote more, but this post is becoming overly self indulgent, so its ending here. Knowing the lines to draw regarding what is and isn’t a result of being disabled would help me individually, as well as helping other PwD to acknowledge and understand the roots of some of their struggles better.

…And for this reason, they should have shrinks who dedicate themselves entirely to clients living the wheelie life. I’d pay big bucks to be a part of that.

Disability 101

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Disabled ppl have friends?!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Being in a Social Work Intensive program means writing a reflection of self roughly every 5 seconds. In my last short reflective interval, I was was required to write about cultural influences and the culture I identify with.  Naturally, I wrote about what it’s like to be a black man, and a few friends have asked that I make my mini-paper accessible. So here it is. Please don’t expect mind-blowing. This is the basis for what it’s like for any oppressed group ever. Nothing that hasn’t been done before.

I’ll admit to being one of those students, who, before this class, never gave much thought to the culture in which I belong. The textbook tells me this is a symptom of being part of the dominant culture, and I guess it must be, as humans are only apt to look for points of difference and are ignorant of privilege until they are deprived of it.

As you might have guessed, I’m a white girl, born in raised in a little suburban white town with white fences and bright white church steeples. As is such, I have never felt discrimination for my fair skin tone, or the culture that I unknowingly practice, because it was the culture of most of my peers.

This does not mean, however, that I escaped all accounts of cultural difference, as I am also physically disabled. I debated whether or not to include this aspect of myself in my reflection on cultural identity, simply because hard evidence that disability in and of itself has a “culture” is hard to find. But to not include my disability in the making of my cultural beliefs would be to leave out one of my pivitol drives and factors that influence how I see others and myself.

When discussing whether or not disability is a culture with one of my disabled friends, he was quick to answer,

“Disability is not a culture. No.”

I challenged him, saying that a culture is a way of life which a group of people express similarly. He looked at me puzzled, but with conviction and said, “Well then disability is an anti-culture.”

I am not much for technical terms, but “anti” being synonymous with “against” or “opposed to” indicates that my friend thinks of disability as an oppositional culture. Personally, I see disability culture as one rooted in such shame that many members deny or hide their affiliations with it. As our textbook very briefly discusses, stigma behind disability includes weakness and inferiority, something that is counter to the ableism which is so prevalent in Canadian society.

My own admission to being part of a disabled community was a long time coming. Right up until late adolescence, I grew up being the only disabled person in my community, fighting disability constructs constantly with assertions of intelligence, academia, and, when really grasping at straws, wit an an oh-so-persevering spirit. This is the anti-culture to which I believe my friend referred, as it is never good enough to simply be disabled, you must have to compensate for such perceived weakness or be exceptional in some way.

As a way of forming connection with able-bodied people, I often look for people who are physically able but are part of another  minority, or have an obvious point of difference. In my experience, two people who have experienced oppression and marginalization are more likely to relate to each other, as they are both looking to be treated equally. Though this is specific to my experience, I have witnessed similar paths of connection with other members of the disabled community and believe it to be quite common and natural.

This is the point at which my assignment wrote itself into the positive elements my difference will bring to SW. I wish we had more than 500 words…but, save that for another reflection.