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Post by Claire on Apr 18, 2007 10:00:43 GMT -5
Thanks Tri, I appreciate your being so open minded. This is a EXCELLENT question and one that is very difficult to answer because the mind is a complicated thing. For one thing, I don't think I have myself put together all the pieces and I am not sure that anyone has. For another, I find it difficult to put it all into words. But I will give it a shot. I will probably get it all wrong and go back and edit this three times, but, here goes... And apologies in advance for anyone who is offended by this. It's not meant to offend. I'm trying to honestly and openly explain and answer Tri's question. In one way, it's a parallel of the devotee experience and that is why, for me, and for the transabled who are also devs, the two conditions feel inseparable. Two sides of the same coin. Do you remember this thread: paradevo.proboards43.com/index.cgi?board=general&action=display&thread=1169519740&page=1It was about a wheeler who had posted some videos on YouTube and I pointed out that he was a pretender. AB said something that really hit me: "He doesn't have a real body, like the guys on this board." That's just it. To AB, and to most of the other devs here, he didn't have a "real" body. His body wasn't what they wanted, wasn't what they were attracted to. As devs, contrary to the vast majority of the general population, they are attracted to atrophied legs. His aren't. They want atrophied legs on a man. The BIID experience is kind of similar to this. I have strong, muscular, working legs, but they're not what I want (here they are! transabled.org/wp-content/uploads/2006/11/clairechair2.jpg ). Just as the devo isn't attracted to such legs, nor do I want such legs for myself. I just can't appreciate them and I want something different. For reasons I can't fathom, I want paralyzed, atrophied legs. But it goes deeper than a want, it's a deep NEED, an obsessive need, a longing, at times an inability to get my mind off how my body feels wrong. If the pretender on YouTube has BIID, he would absolutely agree with AB that he doesn't have a real body. I don't feel right in my own body. Now, I want to be thinner. I want my hair to be thicker. I want to have smoother skin. I would love to have breast reduction surgery and a tummy tuck (I've had 3 kids! I'm your typical soccer mom.). These are all basically normal wants. They don't obsess me or make me miserable. I'm ok with all that. Most women want these kinds of things to some degree. Wanting to be a paraplegic is NOTHING like these kinds of normal everyday wants. It's a need, a drive, a heartbreaking longing and perhaps something that you can't understand at all if you've never had a clinical obsession. (EDITED TO ADD: Of course everyone can understand a heartbreaking longing, perhaps this group most of all. I mean to say, a longing for something *completely illogical*.) It's like being a devotee, but wanting it for yourself, not for somebody else. But for me, it's not a sexual thing. The devotee side of me is the sexual component, and the BIID side is a personal, body image thing. I don't get turned on sexually by the thought of myself being a paraplegic. (and no, I don't want to be a paraplegic so that devos will find me attractive, either!) A few days ago I was walking down the street and found myself following a young, attractive para for at least 15 minutes (by accident, we were both going the same way). Wearing shorts, no less! Beautiful legs. Cool chair. Now any dev here knows what that will be like. Heart rate speeds up, breathing speeds up, and you want to check him out, he is HOT! You're sexually aroused. So I go through all those kinds of things like any dev here will. But there's something else going on with me at the same time. And at times like these, the devotee in me is very present, but takes a back seat to the wannabe. A deep longing to be like him. I want those legs. I long to have his legs. If I could I'd trade places with him in an instant and we'd both be better off for it. I'd love to be with this guy, but even more than that, I'd love to have that guy's legs on myself. Or better yet, BOTH of those situations at the same time! (And yes I realize that sexually this would require some creativity but honestly, who cares...) I am thrown into a kind of emotional turmoil, a double whammy, every time I see a para. My heart is breaking that I can't be like him (or her). All that was to try to convey what it's like to be a paraplegic wannabe (OH, how I hate that word, wannabe! It trivializes the whole experience.) Since my body image is that of having paralyzed legs, then that's the answer to your question. The significance of disablement is just this, that my body would finally correspond to my body image! I would feel right inside my own body. It would be what my mind says it should be. And the bitch of it is, I am probably right about that. I am in contact with several realized amputee wannabes and actually becoming an amputee was everything they thought it would be. Instant and total joy when their dream came true. No regrets. A release from the obsession. Satisfaction and a sense of wholeness and completion even 20 years after the amputation was performed. Knowing that makes it all harder to take, because the fear of "what if it's not what I think it would be", while present, is reduced, and thus there is not much to hold the desire in check. There is more to it than that (such as wanting to experience life like this even if you can't actually paralyze your legs), but that is the underlying, basic answer to your question, and I have gone on long enough. Edited to clarify something in the 6th paragraph. I knew I'd end up doing this.
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Post by Claire on Apr 18, 2007 10:19:56 GMT -5
It may be that BIID is also a modern disorder that accompanies the modern social construction of disability. Not to say BIID isn't real, even if it does have a neurological basis, the same neurological disorder might have caused different symptoms in a different cultural setting. FASCINATING comment, Devogirl, thanks for that.
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Post by Sean on Apr 18, 2007 17:21:52 GMT -5
But...I get no real sense of what it all MEANS to a pretender; what SIGNIFIGANCE does disablement have for you.<SNIP> That's what I'm curious about; not so much how you feel Pretending, or even why you want to...but what it really is about the nature of disability that you want to assimilate, take on, bring into, your OWN life. Maybe we’re unable to express it because it’s not so much about the nature of disability, but about a sense of being. When I say that it feels “right” when I wheel, that is what it is. First, I must align my body with my psyche. The only way to fully do that will be to be a para. Short of that, I must resort to using a wheelchair on a daily basis. As a result, because I use a wheelchair, I experience similar things as any other wheeler with a physical impairment would. But for me, primarily, it’s not about experiencing disability, not in so many words. It’s about being *me*. The rest just kinda comes with. But the rest is not insignificant. I was lucky enough to be very involved in the disabity rights movement for a while. And what I found there was amazing. For the first time in my life, I felt accepted. It was like coming home for the first time. Now, you may argue that I was accepted under a false pretense, that if people had known I wasn’t physically disabled, I’d have gotten a different welcome, and I take that on board. The thing is, I didn’t start using the chair because I wanted to be included in the disability community, nor because I really identified with that community (how could I, I had never really interacted with folks with disabilities). It just happened. It is a wonderful “benefit”, but it isn’t “what’s in it for me”. So what is it about disability that I want to bring in my own life? I am not sure. Perhaps it’s not about *disability*, perhaps it’s just about *impairment*. The disability (taking a social model view) is all the steps, narrow doors, narrow minded people, etc. Realistically, that sucks, and that’s not why/what attracts me. Fighting against that (with some measure of success) feels good and is positive, but that, as I said earlier, is just an added bonus. However, if you look at the impairment, then, yeah, that’s what I need to bring in my own life. Claire mentions “floppy legs”, which is a big part of it for me. It’s not logical at all, but I need to have legs that don’t feel, don’t move. Basically, I need to be an L1 paraplegic. Yes, it sounds arrogant to be picking a level, why not C4? But I didn’t really *choose* that. It has always been how I felt inside. From about age 4 or 5. Only later, when I learned about SCIs was I able to say “L1 SCI” would accomplish what I feel inside. So it’s not about arrogance, it’s just a reflection of how I’ve always felt, from a very young and unconscious start.
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Post by Triassic on Apr 19, 2007 1:18:30 GMT -5
Well...maybe it's just me. Maybe I tend to be curious about Meaning, when for others that's a secondary consideration at best. Because we're still not quite there...
Wylz and Claire are focussed on legs; floppy, useless, atrophied legs, legs which will never support weight. You really, really want/need those legs for yourselves.
I get that.
OK, fine; but what do paralyzed lower limbs MEAN TO YOU? Just freestyle here, go wild, let's try to dig in; What are thin, paralytic legs 'saying' to you? Don't just tell me you Really Like Them, or that you Just Feel Right when pretending, go deeper here...
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Post by Sean on Apr 19, 2007 2:05:09 GMT -5
What are thin, paralytic legs 'saying' to you? Don't just tell me you Really Like Them, or that you Just Feel Right when pretending, go deeper here... And therein lays our miscommunication, methinks. When I say "it feels right", or "this is how I feel I was meant to be", it's about as deep as it gets. It's a question of body image. It's a question of split between what my psyche tells me my body should be like, and what my body is actually like. It doesn't get any more profound than the question of "what is self?". And for me to tell you "it feels right" is for me to tell you that the self I perceive should be paralysed, and that using a wheelchair is as close to the "self" I should be as I can get to right now. Does that answer your question a little better?
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Post by Triassic on Apr 19, 2007 6:24:38 GMT -5
OK. I have to take you at your word. But I can't help but wonder if there could be more to it somewhere..
Why? Well, because I possess a pair of legs pretty similar to what you want. They have sensation, and they move, but they will not bear weight and the atrophy is severe. And I can tell you, they''re pretty shocking looking. They even shock me sometimes.
So, yeah there could be some ju ju there; in the contrast between a fairly normal upper body and useless, skeletal legs.
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Post by Ciao Bella on Apr 19, 2007 8:21:32 GMT -5
"OK. I have to take you at your word. But I can't help but wonder if there could be more to it somewhere.."
Tri, isn't this something you would also say to devotee? This thread has got me thinking again of why I am what I am. And yet again, I have no concrete answers to give, even if a panel of psychologists grilled me like the Spanish Inquisition lol.
My view on pretenders? I consciously make an effort not to have an opinion about them because to some degree we are all "suffering" in the same psychological "prison". The very first time I ever heard of pretenders or wannabes (not that they are the same), I had my questions too. I initially thought that they were quite twisted. Then I thought, hey, I'm not exactly without my "twistedness" either.
That's my view, or rather the lack of it lol...
Cheers all!
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Post by Claire on Apr 19, 2007 8:26:14 GMT -5
Tri, I get the sense that you're fishing for something along the lines of: - I want to face a challenge and overcome it
- I want to be a part of the community and fight discrimination
or perhaps something like - I want to be an inspiration to those around me
- I want an excuse for why I'm not succeeding in life
Or some other such profound thing. The thing is, the root of all this is about body image. It's about the physical form that your body takes. But as Sean says, that's not superficial, that in itself is a profound thing. That said, as you live with this over time, and your natural curiosity leads you to learn more about the condition you want, and you get to know disabled people, and you pretend and face discrimination and accessibility issues, you can take on some of these viewpoints and learn why others are total bullshit. I must say that once I started pretending I found the challenge of navigating a more-or-less accessible city, or dealing with people being weird with me, rather compelling (as well as downright insulting and infuriating). I have a heightened sense of what forms discrimination against the disabled take, as well as what I can do about it as an AB and as a wheeler on the street. I would indeed like to be a part of the community and, actually, I am your staunch ally (and that said, I realize that to many of you I will be unwelcome, but so be it; others have embraced me.). On the other hand, I have experienced the indignity of being enthusiastically praised "good for you!!" for managing to accomplish the most mudane of tasks. Having grown up in close contact with three wheeler cousins and two others who were developmentally disabled, the concept of being an "inspiration" just sickens me, because they are/were people just like anyone else, with good qualities and bad qualities, and various levels of perseverance, inner strength, and success (whatever that is). A disabled person can be as inspirational (or not) as an able-bodied person. And as for success, I've always felt I'd be more successful as a disabled person because I'd be free of my BIID and able to concentrate more on the rest of my life. But aside from that, it seems to me that success can be measured many different ways, is unrelated to the physical form your body takes, and has many factors such as personality, education (and access to it), opportunity, sheer luck, work ethic, etc. So, if you have BIID, as a person with an interest in disability, with experience interacting with the disabled, and going out into the world as a disabled person, you do take on (or reject) some of these more profound issues/reasons/idealogies. You may grow to have very strong feelings about all of it, but it's all a side effect of needing your body to be in some specific physical form.
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Post by Claire on Apr 19, 2007 8:58:24 GMT -5
Hey fubb,
Well, I can only guess. For one thing, it's not really specifically an SCI that we desire. We desire paralysis. We tend to say we want an SCI because that's the best way we know to get there. I just want non-functioning legs, really it doesn't matter how I arrive at that. It could be (or have been) spina bifida, or polio, or transverse myelitis, or an SCI, or femoral nerve damage, or...whatever. Saying we want an SCI is just a means to an end, not really the specific desire for an SCI. An SCI is simply, I believe, the most likely way to get there at this point in history.
My guess is, a transabled person living in the past where an SCI was usually fatal, would still experience a desire to have non-functioning legs, but would most likely not think of it in those terms. In fact they probably wouldn't even know what an SCI was. They would probably think of it in terms of "desiring to be an invalid" or "desiring to be crippled" or however it was thought of at the time. They probably wouldn't decide upon an SCI as the means to their end, but rather desire that some "crippling illness" fall upon them, or something.
Hope that helps.
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Post by Ouch on Apr 19, 2007 9:44:10 GMT -5
Hmm...wow, this has turned rather interesting, and I thank Claire, et al. for sharing with us.
Tri- (and Claire and Co. smack me 'round a few times if I'm wrong) how I'm understanding their need for 'disability' is sort of like they have something on them they want to get rid of...in a way perhaps (although this is simplistic) perhaps like an Obese person would wish to get rid of weight, they want to get rid of the use of their legs (or whatever they want to get rid of, perhaps it can differ)...or perhaps, Tri, picture yourself having this huge tumor-like growth somewhere on you...I mean gigantic and unwieldy and unnatural (perhaps it is deformed and pussing, etc.) it nearly makes you want to vomit when you think about it, much less to see it...now imagine depending on it to do activites of daily life. This thing seems to you like something out of an alien horror movie attached to you...would you just go about calmly leaving it on you...or would you want to get rid of that thing? Probably get rid of it...my understanding is this is somewhat equal to what Claire, and others are feeling with their legs and such...like something that shouldn't be there...and it negatively affects them because it is there (or functioning at least), so bad that it can make them sick even, as it seems like Claire described.
On a semi-seperate note...and I say this in all seriousness...I wonder if Van Gogh had BIID or something of that nature...also I wonder if in anyway BIID has some link psychologically to empathy/sympathy at all (or even identity), which make those with it, feel un-/sub-consciously believe they shouldn't have ability because others don't have it as well...I don't know if there is any evidence proving or disproving.
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Post by Claire on Apr 19, 2007 11:09:52 GMT -5
Hmm...wow, this has turned rather interesting, and I thank Claire, et al. for sharing with us. You're welcome, and thank you and others for your interesting questions and comments. I have learned things myself during this conversation. It can be interesting to discuss this when tempers don't flare on either side. Tri- (and Claire and Co. smack me 'round a few times if I'm wrong) how I'm understanding their need for 'disability' is sort of like they have something on them they want to get rid of...in a way perhaps (although this is simplistic) perhaps like an Obese person would wish to get rid of weight, they want to get rid of the use of their legs (or whatever they want to get rid of, perhaps it can differ)...or perhaps, Tri, picture yourself having this huge tumor-like growth somewhere on you...I mean gigantic and unwieldy and unnatural (perhaps it is deformed and pussing, etc.) it nearly makes you want to vomit when you think about it, much less to see it...now imagine depending on it to do activites of daily life. This thing seems to you like something out of an alien horror movie attached to you...would you just go about calmly leaving it on you...or would you want to get rid of that thing? Probably get rid of it...my understanding is this is somewhat equal to what Claire, and others are feeling with their legs and such...like something that shouldn't be there...and it negatively affects them because it is there (or functioning at least), so bad that it can make them sick even, as it seems like Claire described. That's a really good understanding of it, although, in my case anyway, it's not a question of revulsion, but more of frustration. I'm not disgusted by my legs as I would be by some pus-filled alien horror movie thing, no. It's like wanting to be free of an encumbrance, but that may be more the case for amputee wannabes than for me personally. And even "encumbrance" isn't quite the right word because I admit that it's very useful to have legs and it can be a bitch trying to do stuff from a chair that would normally be very easy were you standing/walking. But my body just doesn't "fit right". Perhaps it's more like wearing some really uncomfortable piece of clothing all the time. But the feeling of frustration and longing to be free of it can indeed make me sick sometimes, just like any strong emotion can have physical effects on you. On a semi-seperate note...and I say this in all seriousness...I wonder if Van Gogh had BIID or something of that nature... Possibly! Perhaps a deaf wannabe? I am sure that there have been incidents in history where things weren't quite what they seemed. also I wonder if in anyway BIID has some link psychologically to empathy/sympathy at all (or even identity), which make those with it, feel un-/sub-consciously believe they shouldn't have ability because others don't have it as well...I don't know if there is any evidence proving or disproving. I have never felt guilty that I could walk when others couldn't and I don't recall ever having that discussion with other transabled individuals (it's an interesting thought, though, maybe I will!) I have felt deep irony that others get injured and don't want it, when I don't get injured and do want it. And I have felt guilty for wanting a disability when others don't want it, and I have felt guilty for being a "sick and twisted" devotee. So, I've experienced guilt enough over it all; not guilt about actually being AB, but rather about desiring impairment (or being attracted to it).
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Post by cabdy on Apr 19, 2007 22:26:57 GMT -5
wow Claire, I really think you are an honest nice woman !!! I like your way of thinking and the way you feel. I think just like you and I feel fine just by knowing there's someone in the world who thinks the way I do.
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Ahiru
Full Member
Posts: 135
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Post by Ahiru on Apr 19, 2007 23:55:20 GMT -5
In this case I think Claire was the best person to "take up our cause". I'm a rather direct person So I'm not too good in the argument situations.
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Post by Claire on Apr 20, 2007 0:21:38 GMT -5
Thanks Cabdy. It is nice, isn't it, to know you're not alone in this bizarre thing? I thought I was the only one in the world until I was 28 years old. And thanks Ahiru. Wylz has put more thought into this than I have, and rorschach's comment was excellent as well. But **nobody** is arguing! Regular members of this board are asking thoughtful questions and I'm just answering them as best I can.
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Post by Triassic on Apr 20, 2007 0:42:34 GMT -5
Claire, no I wasn't fishing in the manner you describe...no. What I'm getting at is less abstract than that. Maybe I'm just overly analytical. For instance, I'm attracted to female bodybuilders(check out shemuscle.com). But if asked Why I wouldnt just say; 'I don' know' or 'they're hot'...I could actually give you a little dissertation on what a strong girl Means to me. I actually KNOW what girl muscle 'says' to me on that level.
I think about those things I like and dislike, and why. Maybe a lot of folks don't...they just go through life Feeling more than Thinking.
It's like with a male cross dresser. He probably will wear frilly undies and a girly dress rather than pink sweats and a sports bra. Why? Because the ultra feminine is what he's after. It is what grabs him.
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