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Post by Claire on Apr 20, 2007 13:57:59 GMT -5
Actually, Tri, I'd *love* to hear your dissertation on what a strong girl means to you. I have put quite a bit of thought into this and Wylz has put a TONS of thought into this. I am not sure what more can be said, but there are certainly things about this bizarre condition that have yet to occur to me. (I discover something new daily, I think!) Just this one discussion has given me enough material for two weeks of posts to my blog! Maybe hearing your dissertation on strong girls will jog something in my head and I will be able to tell you more along the lines of what you are looking for. I would, very much, like to understand the question you are asking, and answer it to your satisfaction.
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Post by Triassic on Apr 20, 2007 22:51:00 GMT -5
Heh. Well, it's private. But it has to do with power; feminity and sexual power..
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Post by matisse on Apr 20, 2007 23:39:12 GMT -5
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. That would be me. I give little or no thought to why I like what I like.
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Post by Claire on Apr 21, 2007 7:33:33 GMT -5
Heh. Well, it's private. But it has to do with power; feminity and sexual power.. Well, see, that's why this isn't working. Because at the root of it, it doesn't have to do with concepts like that. Say we take the view that BIID is neurological (The Center for brain and cognition at UCSD is doing a study on this right now - www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=17292561 ). This hasn't been proven yet, but just for the sake of argument. If BIID is caused by a dysfunction of the right parietal cortex of the brain, where body image is processed, then it's hard-wired. It's a physical defect in the brain that most probably is congenital, as most BIID patients have memories of this that go back to very early childhood. How could a congenital brain defect be caused by an issue with concepts such as power, or attention (or wanting better parking spaces, or wanting free government wheelchairs, or desiring to mock others)? It can't. And that's why I'm unable to answer your question any better. Hope that helps.
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Post by Ray T on Apr 25, 2007 17:07:38 GMT -5
it is easier for me to understand devos than it is pretenders... i think we all have something that would class us as some sort of devo whether it is a guy that likes big breasts or a gal that likes older men it is just something we are attracted to with devos it is people in chairs. Moreover, it is easy to pick out what we like about something that we are attracted to, and think back and find out why we like what we do... as for pretenders I think some of them like Claire truly have an image disorder while others just do it for the attention it brings them. I can see why true wheelers get upset about someone pretending. Someone that wants what a wheeler dose not is like a slap in the face to some I am sure. I am rather divided on the issue. On one hand, the pretenders can see what we go through in a way and they do understand some of our issues but they are parts of it they will never understand, and it is that part that i think holds the reason that People like me that are wheelers don't want to be. The uncontrolled bladder and bowls, the presser sores, the pain that morphine will not touch all of the UN-nice things like crapping yourself in public or falling out of your chair. All those things that make a wheelers life not so nice sometimes those are the things that pretenders do not have and cannot understand. Most likely, they do not want them. It seems to me that if a person suffers from true BIID. It is rather in the same group as anorexia, or bulimia (the people are so thin they are about to die and still feel they are fat) who knows i just think it takes all kinds and that I should love and respect everyone for who they are. AB, Pretender, Wheeler, Devo, or what ever. If we all did that, there would be peace in the world. The only negative thing that I can see about pretenders is. What if they get out and do something that makes people see true wheelers in a bad light or gives them a false impression of what a wheeler is like. There is more to what i think about all of this but I am not so sure how to phrase it without sounding as if i am being mean. Like when Claire went to church and got out of her chair and butt scooted up the steps. She admitted she cheated ECT. well now that the people saw that they may encourage a true wheeler to try the same and that might be disastrous for them broken skin for a wheeler can mean death... at the best a few weeks of wound care. From a scrape on the butt or legs at the worst a few weeks on there bellies in a hospital while the wound heals or even dieing form it... Christopher Reeves died from a skin brake down. Just little things like that i think of is the only thing that i can see that would be any harm in someone pretending outside there home. I hope you do not think i am to judgmental or harsh in my opinions.
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Post by mrjefffurz on Apr 25, 2007 20:37:11 GMT -5
i have had to rearrangement my thoughts and feelings after reading this thread...i apologize for my original post...oeople with these disorders have my respect and sympathy and i truly wish you all a means, mentally, to have your pain relieved...please forgive the ignorance i expressed before
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Post by Claire on Apr 26, 2007 13:43:46 GMT -5
jefffurz: thank you, I am really touched and very much appreciate your message. There is nothing to forgive, you didn't know, couldn't know, until someone came along and tried to explain it. But thanks for listening, and making the effort to try to understand. Listening is a 2-way street, and I am also listening to you, Ray, and I think you bring up a couple of really valid points. I'm working on a response for you, but it may take me a couple days to post it...I need to think, and also, things are just a bit hectic around here personally. Just to let you know I'm not ignoring your thoughtful post, although someone else might get to it before I do.
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Post by Sean on Apr 26, 2007 20:16:30 GMT -5
Ray, thank you for taking the time to listen, and for your willingness to discuss these issues with a calm, level head. That goes for you as well Jefffurz. I really *do* appreciate this. I’ve never expected everyone to agree with us/me, but it is nice to be able to discuss things and have a meaningful exchange. So, guys, thanks for that it is easier for me to understand devos than it is pretenders... I think we all have something that would class us as some sort of devo Yes, I think it’s indeed easier to accept and understand. There are those who are warned against devotees before their first encounter, and I think the problem there is that there *are* a few rotten apples that have predatory behaviour (though this seems to be more in the domain of the male dev), that give every other dev a bad name. as for pretenders I think some of them like Claire truly have an image disorder while others just do it for the attention it brings them. I would agree with you about the importance of making a distinction between someone who pretends because they have BIID, and someone who pretends for other reasons. I’m not sure I’d categorically say that pretenders that don’t have BIID pretend only because of the attention it brings them, I think the motivations of people can be MUCH more complex than that. I can see why true wheelers get upset about someone pretending. So can I. But in general, the “upset” comes from misunderstanding what pretenders do, and why we do it. Granted, as with every other “community”, there’s always a few idiots that ruin it for everyone else, and it is easy to focus on the handful of unethical pretenders (I’ve met a few, I’ll spare you the details). But it’s just as true that there are assholes with “real” (physical) disabilities, does that mean that all disabled people are assholes? I don’t think so Someone that wants what a wheeler dose not is like a slap in the face to some I am sure. Yes, it probably does. I’ve often thought that, particularly for the folks that are intent on finding a cure for SCI, it would be difficult to have such a huge part of yourself pushing in one direction, then having someone come along and say “hey, I want what you’re trying to cure”. It certainly could force someone to feel very uncomfortable. On the other hand, I’ve also had people with disabilities tell me that they felt good about the fact that, for once, someone wanted to be like them, as opposed to think “better dead than disabled”. the pretenders can see what we go through in a way and they do understand some of our issues but they are parts of it they will never understand You’re right, until/unless I become a para, I will not know exactly what it is like. I’ll venture to say that I’m probably one of the non-sci people who get it best. I have a deep intelectual understanding, plus I have a dozen years’ experience with the day-to-day wheeling stuff. Living with my late wife (a para) for years also taught me things one can’t learn in books. I’d even say that were I to get my wish tomorrow, I still wouldn’t know exactly what it’s like for you. All those things that make a wheelers life not so nice sometimes those are the things that pretenders do not have and cannot understand. Most likely, they do not want them. We’d be fools to want chronic pain. I have a *small* amount of chronic pain due to osteoarthritis. My wife used to tell me about her nerve pain. I experienced some nerve pain myself last year after a fall from a ladder. Yet, it is something I’d be willing to take on. I can’t tell from this side of the fence, of course, but I tell you, the mental anguish I go through, if that can be removed, I’d trade it gladly for physical pain. As for incontinence, as silly as it sounds, it’s always been part of the equation for me (note I’m only taking for myself here). I have known that it was part of my “condition” for as long as I can remember. I am *well* aware of the downsides, and would take it all in. I don’t want the convenience of picking and chosing which side effects I’ll have. It’s bad enough that for some reason I ‘settled’ on an L1 SCI (the gods only know why). It seems to me that if a person suffers from true BIID. It is rather in the same group as anorexia, or bulimia (the people are so thin they are about to die and still feel they are fat) There’s actually a rather big difference. Someone with anorexia has an erroneous perception of their body. They *believe* they are fat. Someone with BIID knows full well that their body is “normal”, but we wish for that to be different. I just think it takes all kinds and that I should love and respect everyone for who they are. AB, Pretender, Wheeler, Devo, or what ever. If we all did that, there would be peace in the world. Hear! Hear! The only negative thing that I can see about pretenders is. What if they get out and do something that makes people see true wheelers in a bad light or gives them a false impression of what a wheeler is like. And that is a major concer for myself as well. I know I work very hard at not doing anything that might complicate the life of the next person after me. And I know Sophie, and Claire, and most everyone I know that uses a chair in public, they all have the same attitude. But then, how many people with physical disabilities are behaving like idiots and do cause problems for the next wheeler coming after them? Unfortunately, pretenders don’t have the monopoly there. There is more to what i think about all of this but I am not so sure how to phrase it without sounding as if i am being mean. I’d like to know your thoughts on this. I’m sure we can all behave like adults and understand that this *is* a difficult topic, and not get carried down to flame wars Like when Claire went to church and got out of her chair and butt scooted up the steps. She admitted she cheated ECT. well now that the people saw that they may encourage a true wheeler to try the same [...] Just little things like that i think of is the only thing that i can see that would be any harm in someone pretending outside there home. Yes, but... Note, I’m not trying to be argumentative, just trying to widen the perspective of this conversation How many times have folks with physical disabilities gotten out of their chairs? How many times have they allowed people to carry up and down steps? If there’s one thing I learned during my years with my spouse and working in the disability rights field is that we ALL do things differently, we all have different issues, and it’s quite difficult to make generalisations about what is, or isn’t, harmful. We can only do our best, and I think that’s what we do. I hope you do not think i am to judgmental or harsh in my opinions. No, absolutely not. Heck, were you to disagree with me, yet still be willing to have a conversation, I’d be quite happy
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Post by Ray T on Apr 28, 2007 0:56:19 GMT -5
Sean, Well said and if all pretenders took the same effort that the you and claire took then all wheelers mighe not look at them so harshly. but like you said it is the few rotten apples that make the whole basket smell rotten... But if I have learned one thiong from being in this chair it is to ever judge untill you have been in the otherpersons position and then anly judge lightly because not everyone is alike in the way they handle things... be suportive and openminded, try to help as you can and comunication, comunication, comunication. People tend to fear and hate hwat they do not understand... the more you know the more power you have... Oh by the way Claire you have some sexy legs... lol how about sharing a full body photo... with your smiling face.. if you half as pretty as you are smart we will all be in for a treat... :-D (Yes it is a lame atemp at a flirt on my part)...lol
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Ahiru
Full Member
Posts: 135
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Post by Ahiru on Apr 28, 2007 10:11:37 GMT -5
I'm not too good with articulate responses etc...I have a tendancy to say things I'll regret when I get too involved in something I'm passionate about. Otherwise, I'd be right in there with Claire and Sean.
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Post by Claire on May 1, 2007 8:24:31 GMT -5
Oh by the way Claire you have some sexy legs... lol how about sharing a full body photo... with your smiling face.. if you half as pretty as you are smart we will all be in for a treat... :-D (Yes it is a lame atemp at a flirt on my part)...lol Hehehe, thanks Ray. No photos though, I'm a pretender, and for now at least, I have to guard my privacy closely. Claire isn't my real name. Sean has seen my photo, you can ask him if I'm as pretty as I am smart. He pretty much said everything I was going to say (I took notes, did you steal them, Sean!) I am not sure that it's easier to understand devoteeism than pretending. I'm both. In me, and I suspect in most female devs devoteeism is relatively benign. But go on YouTube and see those videos that male devs have taken without permission or knowledge of female PWDs, and posted publicly for the consumption of other male devs. I have even been contacted by male devs who think that a female pretender is the next best thing when they can't get a female PWD to pass the time of day. These guys creep me out. They ask bizarre questions like "have you ever tried to cath yourself" and ask me "are you in your wheelchair now" and "does being in a wheelchair turn you on" (no it doesn't) just pump me for details. One male dev I talked to has a wannabe girlfriend and talks about planning a dangerous attempt to paralyze her (I kid you not), with her full cooperation (in her compromised mental state), I might add. Not all male devs are like that but a percentage of them are. I have talked to many a pretender who doesn't seem to have good reasons for pretending, but that said, they don't do anything overtly harmful to others, either. Only one pretender that I've ever spoken to is engaged in morally questionable activity and that is an attempt to defraud his insurance company (he doesn't have BIID, either). In no case have I ever heard of a pretender bludging off the government, or bothering/harming other people. We tend to keep to ourselves. So for me, on the whole I see pretending as much more benign than devoteeism. Regarding "doing the wrong thing in public" I think that is a valid concern, but everyone does things differently. I scooted up steps because I had seen my para cousin scooting up steps in much the same circumstances and read about Hockenberry doing the same thing on multiple occasions. That said, I *do* regret it, but more for the fact that I acted indecisive and wishy-washy and let these well-meaning people turn the whole thing into a circus act. I think that...and let's be cautious, I'm talking about pretenders with BIID here (the others, I am less certain of, but am willing to entertain the notion that there could be more than one valid psychological need to use a wheelchair, but anyway, I digress...)...pretenders with BIID *do* actually need guidelines. And it should be more than just a code of ethics. In a perfect world, there would be a treatment protocol for BIID that includes some kind of professional supervision. Right now, we're just told, by others with BIID, and in some of the professional writing, that pretending is a way to control symptoms of BIID and so we go out and do it, desperate to try anything, but without any training before we do. Some kind of training, what to do, what not to do, how to actually use that wheelchair...would be in order. But we're not *there* yet, as the three mental health professionals I have seen had never even heard of BIID, and where it's heard of, it's very much misunderstood. So we do the best we can. If we're lucky, we'll have a friendly, experienced wheeler to discuss these things with, but the vast majority of us don't.
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Post by Ray T on May 2, 2007 2:41:17 GMT -5
Hey i see a new job for myself... pretender consultent/trainer... you know my OT in rehab is the guy that tought Tom Cruse how to do all the things he did for the movie Born On The Forth Of July... He also went on location with the cast and crew as an adviser. so if you watch Tom... the guy that tought him how to do all he dose for the movie tought me all of that and more... so I think I could teach anyone the same things.... think anyone would be interested?
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Post by Triassic on May 2, 2007 5:02:15 GMT -5
Tom was pretty good as I recall...pretty believable.
You know who wasnt? Eric Stoltz in 'The Waterdance'. I just saw it again, and he keeps forgetting his hands don't work. There he is, steepling his fingers, moving his hands eloquently as he speaks...
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Post by Claire on May 2, 2007 6:05:49 GMT -5
There you go, Ray. There is a conference on BIID scheduled for September at the U. of Missouri (I think). I'll put your name down to conduct a workshop.
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Post by Claire on May 9, 2007 9:50:57 GMT -5
Over on Andy's "new wheelie guy member" thread in Personals, a guest naming him/herself "0109" posted this: "Your a disturbing person Claire, you are mentally disabled, not physically. You use your psychiatric condition as validation for how your pretending. Its not validation, it wont bring you acceptance either. Get expert medical help. then on the other hand you could've tried that already, but you just don't want to." I am not going to hijack Andy's thread with this. So here's my response, in a more appropriate thread: "0109", please read this: transabled.org/thoughts/pretending-therapy-prescribed-by-psychologist.htmIn particular, the last sentence of the post: " So, with this in mind, my psychologist, her psychiatrist boss, and the psychotherapist that they work with and I have also talked to, are all of the opinion that I need to keep doing this, that it’s a good thing." Also FWIW, I'm participating in a study on BIID that is being done by the Center for Brain and Cognition at the University of California, San Diego, overseen by one of the foremost neurologists in the world, VS Ramachandran. This will include some experimental treatments, some of which cause extreme discomfort. But if you had read what I've already posted on the subject you would have already known all of this. Don't judge me on one post, please. I'm just doing the best I can. I don't know if you've noticed, but I never bring this subject up (except in my totally honest introduction post), just answer (honestly) when someone else does.
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