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Saturday, February 23, 2008

Some thoughts on BIID and "transabled" identity...

Trinity recently posted a link to an interview with a man who voluntarily amputated his hand, claiming to have Body Identity Integrity Disorder (BIID). This post started as a comment to Trinity's post, but, because a) it got ridiculously too long and b) I can't comment directly to her blog because I don't have a LiveJournal, so would have had to email the comment to her, I decided to expand it into a full blog post...

Trinity fairly unambiguously found this unproblematic. While as a libertarian there is obviously absolutely no way I would claim to have the right to condemn it (in the "it shouldn't be allowed" sense), I'm a little more conflicted...

Elizabeth McClung posted back in December on this issue, with some strong criticisms of "wannabes", and in the comments there is some discussion of possible parallels with gender dysphoria, and some discussion of models of disability as well. Lisa describes the "transabled" as "trying to cling to the coattails of "Gender Identity Disorder" to legitimise their own thing, which may or may not be a legitimate thing". Elizabeth also makes the good point that the particular types of impairments that BIID/transabled people want tend not to be things that people are born with, but ones that exist as a result of medical science.

BIID or "wannabes" are often associated or bracketed together with "pretenders" (people who pretend to be disabled, whether as a sexual fetish or not) and "devotees" (those who are sexually attracted to disability in others), but I'm not sure about that - I mean, if "wanting to become X" was the same thing as "finding X sexually attractive", then a heterosexual man would be the same thing as a trans woman, and if "wanting to become X" was the same thing as "liking to pretend to be X", then a trans woman would be the same thing as a transvestite or "female impersonator", and both of those are patently not true...

I suppose Jason's experience could be argued to support the social model, by showing that an impairment in itself isn't necessarily "disabling", and that in fact a person can be more "disabled" without an impairment than with it... but then, if BIID is itself an impairment, it's not so much going from unimpaired to impaired, as "trading" one impairment for another - and I'm not sure whether it's social model to claim that it's the impaired person's own attitude (rather than that of those around them) that determines how disabling the impairment is... it does, however, remind me of the debate over whether it's "against" the social model to regard impairments themselves as negative (which I've touched on elsewhere, i think, but probably need to make the main focus of a post... I'd say it's not, and cite feminist authors whose work focuses on embodiment, but others' positions may vary...)

There's possible relevance here to the effect of the origin of disabled people's impairments (congenital vs. acquired) on how easy it is for them to accept the social model, with people's reactions to something like this - i can see how those who acquired a (very much unwanted) impairment could be angered or disgusted at someone choosing to acquire an impairment, while those with congenital impairments, whose desire is perhaps more likely simply to be accepted for who they are, perhaps more likely to be accepting of it...

Nightingale of Samarkand said in the comments on Trinity's blog: "It doesn't bother me either.

Maybe because I spent all those years thinking about disability long before I was diagnosed with one? Either I had a touch of BIID myself or I just somehow subconsciously knew, from the age of 4?"


This has incredibly close parallels with my own life - I had a perseverative interest in disability from the age of about 12 or so, including fantasising about having various different impairments (I didn't, at the time, grasp the difference between impairment and disability), staring at disabled people in the street, desperately wanting to get to know disabled people, etc. (I got involved in volunteering with some very patronising and medical-model projects in my later teens, mainly because I simply wanted to meet disabled people... although, at the time, I kind of felt like that was somehow an invalid or "creepy" or "wrong" reason, and tried to make up other "justifications"...)

Actually finding out that I was disabled made all that make sense, and massively lessened the guilt and feelings of "creepiness" I had had about it - I could explain it in terms of having always known on a subconscious level that I was both impaired and disabled in the sense of socially excluded (even if neither I nor others around me knew of my impairment), and disabled people really were "my people" - that I could now identify with them in the intense way I did without feeling like I was hijacking or appropriating someone else's identity (although, because of my impairment being invisible and having spent most of my life undiagnosed, I do still quite often feel like that, but I can fight it) - however, BIID/"transabled" clearly doesn't fit me, as it involves wanting/needing to have a particular impairment, whereas for me it was and is all about the social/identity side of disability...

A lot of people don't understand my desire to identify as "disabled", to be "labelled" with what they see as a negative thing, or as "limiting myself" - so in that sense I can sort of identify with someone whose desire was to actually become disabled - but then, I'm still conflicted, because I can understand the desire to have "disabled" as a social identity if you already have an impairment, but I can't quite understand the desire to actually acquire an impairment. Then again, I can't intuitively understand what it is to have an inborn gender identity, and feel the need to change your body to match it, either - but of course I will support and defend that...

There's definitely a really close similarity between Jason's narrative and the narratives of very many transsexual people (particularly those transsexuals who felt gender dysphoria from an early age as a "having the wrong body" thing). Some people in the comment thread to the BMEZine article talked about whether BIID could be regarded as neurological in origin, due to a "faulty" neural map, which would make it arguably part of neurodiversity, and went into the blurry distinction between neurology and psychology, which is also a point of debate among trans* circles - some, if not all, trans* people seem to have a "mismatch" between the body they were born with and their neural map of their genital area.

However, something that does strike me as a definite distinction, even if the neural map theory is true, is that, for transsexuals at least, there's very strong evidence that it's primarily their hormone balance which doesn't "match" with their neurology - and, AFAIK, there is no hormonal effect caused by loss or paralysis of a limb...

One interesting thing i did find is this response to Elizabeth's post by Holly, who is a person with BIID who wants to be blind, and is also physically disabled already, with an undiagnosed but probably neurological condition. I couldn't find anything on her blog directly considering the possibility of there being a link between her BIID and her other impairments, but, interestingly, she mentions here that she actually has some vision loss, of possibly neurological origin - which could be evidence for a "neural map" hypothesis - but, i don't know, I'm obviously not an expert on the physical side of neurology...

Again in the BMEZine comment thread, the webmaster of transabled.org and BIIDInfo.org commented:

FWIW, I have a problem with the concept of BIID related self-injury as an extreme body modification. I think that a major difference is one of “choice”. Arguably, most people into Bodmod have a choice, they do this because they want to, or have a statement to make. Those of us with BIID don’t have a choice. Just like transsexuals don’t have a choice. You can repress it, you can ignore it, you can “dislodge” the need for short periods of time, but it keeps coming back. until you have the impairment you need. Then, you’re finally free to get on with life.

This "choice" thing is also really similar to what can become a very, very heated debate in trans* circles - with those whose gender dysphoria was so total that they truly had no choice (unless "transition or suicide" counts as a choice, which, well, I suppose technically it does, but... that leads to a whole uber-abstract philosophical debate about the meaning of the word "choice", which I haven't got the brain cells for right now) often being extremely harshly opposed to those who say that their transitioning was a (genuine, free) choice (and consider it analogous to other forms of body modification).

(To be honest, while I can kind of semi-intuit how those for whom it wasn't a choice can feel kind of trivialised by those who claim it was a choice, I can't really understand condemnation of those who freely choose to transition - but then, the libertarian ethic of "everyone has a right to do exactly what they choose to do to hirself, as long as it harms no one other than hirself" is so fundamental to my entire belief system and understanding of life that I find it hard to get my head round any argument that doesn't accept that... I wrote a bit about that subject (with relation to sexuality) here)

I don't know whether there are any voluntary amputees or "transabled" people out there who, like some trans* people, do feel that what they did was a choice, and in the same category as other wholly voluntary body modifications. (I did read an article once about a pair of identical twin brothers who had an arm removed from one and sewn onto the other one, described explicitly as an "extreme body modification", and couldn't quite work out whether it was real or a spoof/hoax... unfortunately I can't find the link to it now...)

Someone else in the comments accused voluntary amputees of "insulting those who genuinely "happen" to be amputees" - which I have to admit does somewhat remind me of the arguments used by some transphobic radfems about trans women "insulting" "women-born-women" by claiming to really be women... which is another parallel (in this case between the categories of "disabled people" and "women", i suppose) where I'm not actually sure whether i think it's a real/valid parallel or not...

There's also discussion of the distinction between BIID and body dysmorphic disorder (BDD), with the former being seen as potentially parallel to gender dysphoria, but the latter more similar to things like eating disorders (one distinction drawn being that, with BIID, "sufferers" feel "cured" when the desired change to their embodiment is achieved, whereas with BDD people continue to be unhappy with their bodies even after many alterations, suggesting it's more psychological) - oddly, Wikipedia's article on BIID has a "see also" link to BDD, but there isn't a reciprocal link, and only the BDD article discusses similarities to gender dysphoria.

Anyway... bah. Even after all that rambling about it, I'm still not entirely sure what my own feelings are... and this is the second post in a row that started out as a response to a post on someone else's blog that was basically just a link, but has grown into something resembling a uni essay. I'd like to know other crip and/or trans activists' perspectives, tho...

11 comments:

AnneC said...

I had a perseverative interest in assistive devices (crutches, wheelchairs, hearing aids, etc.) starting when I was extremely young -- probably no older then three. I don't remember what it was that initially sparked my interest, but I think I was just fascinated by "life" and bodies in general and the different ways in which they could work (and how the line between a person and "technology" could so easily be blurred). But one result of this interest was that I always wanted to use and play with assistive devices whenever I could get my hands on them -- I just saw them as really interesting and kind of cool ways to experiment with different forms of locomotion and sense perception.

People thought this was really weird and disturbing, though. Adults tried to discourage me from playing with crutches; one relative wouldn't let me because she said it was "a bad omen" (she told me that if I played with crutches without needing them, I'd probably fall and break my leg and then really need them). I never saw anything wrong with it, though, and couldn't see what all the fuss was about -- assistive devices were, in my mind, just tools and sometimes even toys (in the same sense that bicycles and screwdrivers and roller skates are tools/toys).

People would always tell me things like: "You shouldn't use those things unless you really need them", and while I never really understood why, I did as a result go through a phase of wishing my legs didn't work or something so I could "legitimately" have access to the devices I found so fascinating without anyone bothering me about it. So for me it wasn't about "wanting an impairment" so much as "wanting to play with Cool Interesting Hardware".

But at the same time, I also never, ever had the sense that disability was an intrinsically bad thing -- even as a very little kid, I saw it as a neutral variation, like hair or eye color (or being a cat or a dog or a human or a monkey, or being short or tall or whatever). There was a little Deaf girl in my preschool class who also apparently had some kind of "facial deformity" but I didn't even see it -- I remember hearing at one point that she was going to get surgery to "correct" her facial features, and this was really surprising because to me her face was just "her face"; I didn't see any reason why faces were supposed to look a certain way.

When I learned later that I was autistic all that made a lot more sense -- I was shocked to learn that there was a kind of "taboo" associated with assistive devices, and that many people didn't see them as tools and "interesting mechanisms" the way I did, but as symbols of pity. The whole "symbolic" aspect of the devices just went right over my head and I don't think I even realized it existed (in the minds of some at least) until I was in my teens, probably because I read about it somewhere.

I was also kind of surprised to find out that so many people saw disability as "bad" and something to always be "overcome" -- I mean, I've always been able to understand people wanting to change aspects of themselves for their own reasons, but it was incredibly weird to find out that so many people really did hold some kind of "standard template" in their minds as something all humans "should want" to fit.

Additionally, I also think I did benefit from using crutches and walking sticks and such, albeit not in the ways normally associated with such devices. I mean, I could always walk and move my legs and I didn't experience chronic pain of any kind growing up, but I did have a lot of issues with body-awareness and sometimes had trouble "finding myself in space", if that makes any sense. I used to fall down a lot for "no apparent reason" -- my dad tells me that when I was little, sometimes we'd be out and he'd look back to see me on the ground not really knowing how I got there (and I wasn't passing out or having seizures or anything -- it was more that I would "trip over my own feet" a lot). I went up stairs on all fours for years as well, too, because it always felt like I was going to fall off backwards if I stood up, so I'm pretty certain at this point that I have/had some body awareness and balance issues.

So perhaps in addition to being fascinated with "assistive hardware" from an intellectual standpoint, I was also drawn to things that let me run around and not fall down or lose body awareness so much. When I had something I could hold in my hands and touch the ground with, it felt like I was much more "grounded" and agile -- it was like getting an extra channel's worth of feedback and that made it easier to navigate. But there's no way I ever could have explained that as a child!

With regard to people actually wanting impairments of various kinds -- I would guess that there are probably some connections here to phenomena like gender dysphoria and transsexualism. Some people's brains seem to be "mapped" in such a way that the body somehow seems "wrong" (at least from what I've read) -- I mean, I've heard of people with sensory integration issues feeling like their body parts "don't belong to them", so it doesn't seem too farfetched that some folks may experience a kind of extreme version of this. That wasn't exactly my issue but I can at least see it.

However, I think people with that kind of issue are different from people who "fetishize" disability (or the trappings thereof). I don't really have any moral sentiments when it comes to whether it's "appropriate" to appreciate disability in a kinky sense -- so long as people aren't being abused, treated like objects, or depersonalized, I say people should be able to do whatever makes them happy.

I do have some uneasiness around the notion of "roleplaying the 'disabled stereotype'", though -- I've discovered that a fair number of nondisabled people see disability as a kind of "luxury" state in which someone gets a lot of extra help and sympathy and compassion and Special Treatment, and that this creates a weird combination of envy and resentment in some folks. Despite the fact that most actual disabled people find pity and Special Attention and patronizing remarks really, really annoying, I think that from the outside, there's at least a bit of a misconception that disabled people are "getting away with something", which might lead to some folks figuring it would be fun to roleplay the stereotype. And since that particular stereotype is pretty damaging and misrepresentative of most disabled people's actual lives and wants, I am uncomfortable with the idea of people acting out a kind of Hollywood romanticized version of it.

With that sort of thing, I see a strong potential for the acted-out stereotype to make more of an impression on people than the realities of real people's lives, which I don't really see anything good coming from. I mean, autistic people already have a tough time inasmuch as we're sometimes expected to all act like "Rainman" or some other fictionalized autistic character -- it amazes me sometimes how fictional characters (or highly dramatized and embellished portrayals of actual people) get considered "the standard" whereas real people can get written off as "not really X" even though we're obviously more real than a TV character.

So, I guess in summary, I think that the whole notion of "transability" is probably a whole bunch of things lumped together, some of which are probably related to brain/body "mapping" issues, some of which are fairly harmless (if uncommon) kinks, and some of which might fall into the creepy "Hollywood disability stereotype perpetuation" category. I don't know if it's so much of a problem in and of itself as a manifestation of deep, underlying attitudes and quandaries about bodies, impairment, and what it is to be an embodied being in the first place.

Additionally, I would also guess that (as you alluded to, at least obliquely in your post) some people who find themselves fascinated by disability and who "identify" heavily with what they see as a community of disabled persons do have a disability (or at least a significant atypicality) themselves -- just not one that is readily identifiable per their default cultural context.

AnneC said...

Aha -- with regard to what I was trying to express on the subject of people "roleplaying in a way that perpetuates stereotypes", Elizabeth McClung said something in a response comment on this post that echoes my concern (at least in some respects):

Perhaps it is because those with BIID perpetuate so much of the "disability" stereotypes in their desires and actions that I become frustrated with the discordance between fantasy and reality. It is bad enough to have to face that attitude every day from AB people, it is something else when people are actually trying to become that stereotype, or dipping into the stereotype and leaving the icky, awkward, annoying and yet unavoidably realistic bits behind.

I don't think she is trying to say here that "disability is worse than most people think", but rather, that the ways in which some people express their "need/want to be disabled" are based on a weirdly romanticized vision of disability. And in acting out the desired role (with whatever modifications and/or hardware that may entail), people who hold this romanticized vision help perpetuate stereotypes the same way sappy "inspirational cripple" movies do.

And this obviously has the potential to make life more difficult for people who live with the realities of differently-configured bodies (and I am including the brain here as part of the body).

Like you I have a pretty no-holds-barred social-libertarian sensibility when it comes to other people and how they might choose to live their lives. But I think it's possible to maintain such a sensibility while simultaneously pointing out and discussing the potential consequences of people's decisions.

I don't claim to know for sure that someone's desire to roleplay a stereotype will actually end up undermining morphological-liberty and disability activitm, but I do actually suspect that if the stereotypes themselves could be torn down and deconstructed to a greater degree, there would probably be fewer people romanticizing them in the first place. So working to deconstruct stereotypes and popular assumptions seems like a good approach to the whole subject of disability/difference.

foibey said...

A large number of the "choice" transsexual people I know have used "choice" in a political sense as an anti-shame device: whilst huge numbers of the transsexual community are quick to use the medicalisation of the transsexual phenomenon in order to disown it and try to make claims at being "formerly transsexual" once they're "cured" (despite never actually being able to fully escape the social and physiological differences that go with being transsexual), myself and a lot of the transsexual people that I know who refer to transition as a "choice" do so in order to affirm that we made a positive decision about what was the best way to deal with who we our and how we feel about ourselves and transitioning was it and that there's nothing shameful in making that sort of decision and it doesn't have to be disowned and passed off to a group of consultants, therapists, surgeons and whoever else gets involved in deciding whether you "really are" a man or a woman.

The use of the word choice (and in my case it was a transition or commit suicide sort of situation) in this sense isn't actually that complicated by questions about how much choice there actually is between death and transition when choice is being used in this more political sense, I don't think anyway.

Apologies for horrible grammar.

shiva said...

Thanks for the replies...

AnneC:

Additionally, I would also guess that (as you alluded to, at least obliquely in your post) some people who find themselves fascinated by disability and who "identify" heavily with what they see as a community of disabled persons do have a disability (or at least a significant atypicality) themselves -- just not one that is readily identifiable per their default cultural context.

to steal a phrase from Trinity: yeah. THAT.

Of course, that isn't the same thing as BIID IMO, because it's not about wanting/needing to have a particular impairment. I think that's the bit i don't really "get"...

Good to know i'm not the only autistic person who grew up undiagnosed and perseverated on disability/impairment. I wonder how common that is, and if it's specifically an "undiagnosed" thing...

BTW, i *keep* forgetting to add you to my blogroll...

Foibey: Thanks - that makes a lot of sense. Fits in quite well with my thoughts on the "choice" debate with regard to sexuality (in the other post i linked to) too :)

The phrase "formerly transsexual" i can understand in some respects, because those who i know who i've heard use it basically identify the term "transsexual" as "having gender dysphoria" or as "sex and gender not matching" - so post transition they no longer suffer that, and, i guess, they see that as far more important to them than things like passing privilege. But i think that's basically an instance of some people using a term differently from how other people use the same term, and the political implications are not so much deliberate as incidental...

(BTW, if you are who i think you are, although i haven't met you offline, i think we have at least 2 mutual friends/acquaintances IRL...)

foibey said...

Oooherr

I believe I know at least one person who knows you in person, although I know quite a few people on and offline who are members of communities related to your blog and active around similar issues so there's a good chance there're others. :)

Robin said...

Hiya,

Queerpuppy here, toddled over from Ouch (finally) as it does seem we have some views and things in common, and thought I should read your blog.

Have been finding it very interesting thus far, though I confess to not being much with the coherant thought at the moment, so please forgive any general crapness of my comments.

I have freqently probed my brain about BIID and BDD in relation to transsexuality as there are many parallels. But I wonder about BIID - (I don't know vast amounts about it, so if I make ignorant comments, please feel free to correct / enlighten me) in that I haven't yet heard of someone that felt both arms were not part of themselves. It seems more common to find legs are alien limbs. And I think it is arguable that it is less disabling within our society to lose one or both legs than one or both arms.

I also have had a deep interest in aids / orthotics / that sort of thing from early childhood - and not known that I was Neurodiverse until I was an adult.

Trinity said...

Hey Shiva. I had meant to think and comment, but lost track, and my mind isn't much fresher on this.

I should probably say, though, that I'm rather weird about bodily autonomy. I tend to think that denying people the right to do as they will with their bodies is far creepier than anything they might choose to do with them, with perhaps rare exceptions.

I've said in several places before that, for example, devotee*ism* doesn't bother me either -- though the creepy behavior of many devotees does.

I guess for me the thing is that I don't see any way to make these desires vanish, no matter how politically incorrect they are or how many people feel stepped on or invalidated or tokenized or made into a trinket.

And that's the thing. I think those trinket-feelings are real and matter, but I don't think they justify "don't do that."

Then again, I got into trouble at the beginning of Feb/end of Jan for defending people role-playing as Nazis for kink, so... yeah, some might consider me "extreme." For me it's just... well, I get why people feel that's trivializing, but I don't think there's any *action* that can follow from that *feeling*.

So all you're left with is exhorting the person to feel guilty for hir desires, and that to me is never okay. Because what does that accomplish? Nothing, it just makes someone who isn't going to change anyway feel like shit for no useful reason.

shiva said...

Hey, thanks for responding... and sorry for not friending you on LJ until yesterday... i accidentally friended the wrong Trinity. Doh.

I should probably say, though, that I'm rather weird about bodily autonomy. I tend to think that denying people the right to do as they will with their bodies is far creepier than anything they might choose to do with them, with perhaps rare exceptions.

IMO that's not weird at all, in fact i agree with it - denying people the right is definitely far, far creepier. It's primarily the intersections of BIID with trans issues and disability rights issues that i feel more ambiguously about...

Agreed on the devotee thing too. I think there's a *big* difference between physical difference as a kink or something someone finds attractive, and the cultural constructions around that, which are based on stereotypes attached to that physical difference.

As for the Nazism-fetish debate... i didn'ty think that was "trouble", i thought it was one of the best comment threads i've seen in the last year or so. :)

Totally agreed with your last paragraph, too...

Lisa Harney said...

Regarding my statement on Screw Bronze, I'm not seriously opposed to the idea of people voluntarily cutting off their own limbs (or having them cut off), and I think there's probably something there as a lot of people want to do it. I'm bothered that they keep linking themselves to transsexualism and appropriating transsexualism to justify themselves.

Also, that story about twin brothers who transplanted an arm was a BMEzine April Fool's joke. I remember it from forever ago.

shiva said...

Lisa - i think there's a difference between drawing parallels between situation X and situation Y, and people in situation X "appropriating" people in situation Y's experience. I'm not, however, sure exactly where that distinction lies... it's a difficult one for me, because i tend to be all about drawing and emphasising the parallels in order to build alliances and "put the pieces together" into my One Big Critique of Life, but then sometimes get accused of crossing that (to me invisible) line. I'd be very interested in your precise thoughts on when and how it becomes "appropriation"...

Also, thanks for clarifying that the twin brothers thing was a hoax. I had my severe doubts about it, as it seemed just a bit too extreme to be true, but there didn't seem to be anything actually *impossible* about it, so, knowing about all the really true crazy shit that i do know about, i didn't feel able to just call "bullshit" on it straight away...

Good to see you back online anyway :) I was a little worried about you...

Lisa Harney said...

Okay, drawing parallels is generally fine.

BIID people are using trans language to describe themselves, calling themselves transabled, describing their situation as being like transsexualism, basically they're adopting what trans people say about ourselves to justify what they say about themselves. I am not comfortable with them using "transabled" BIID (which is derived from GID), in a direct bid to legitimize their situation.

Their situation may be legitimate, they may be happy after they amputate limbs (and I don't assume they're lying about this), but their constant attempts to associate themselves with us has already resulted in a couple of papers describing trans people as apotemnophiles.

It's not much different from HBS advocates redefining transsexualism as a form of intersex disorder, and how that's appropriating intersex for their own cause.