Ahiru
Full Member
Posts: 135
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Post by Ahiru on Apr 16, 2007 22:52:13 GMT -5
Well I have a question here. You guys that have pretender, wannabee, BILD issues or whatever; are you paying for your own wheelchairs and therapy or is it being sudsidised by the government. Because if it is, what a ludicrous situation where tax paying wheelchair users are actually supporting you people. We pay for everything ourselves. For most of us one of our highest law is not doing anything that affects you guys negatively. I'm sorry if pretenders etc have done so, but please don't judge everyone with the same description. The last thing I would want to do is bludge off the government.
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Post by Claire on Apr 16, 2007 23:52:01 GMT -5
Well I have a question here. You guys that have pretender, wannabee, BILD issues or whatever; are you paying for your own wheelchairs and therapy or is it being sudsidised by the government. Because if it is, what a ludicrous situation where tax paying wheelchair users are actually supporting you people. No government subsidation of wheelchairs! I got my wheelchair for $300 used on eBay. That was fine with me. As for therapy, I live in Canada: socialized medicine. My visits with the psychologist are through the socialized medicine system, but then again I am a working taxpayer. BIID is as real as bipolar disorder or schizophrenia or borderline personality disorder - if you don't have a problem with those people receiving care, then you shouldn't have a problem with people with BIID receiving care. It's just a question of understanding that BIID is real, and it's not really about you, it's about someone having a disorder that can't be helped. And the disorder is obsessive and can really be very distressing and agonizing and needs treatment. That said, psychology and psychiatry have failed miserably to really deal with it. They can help you with coping techniques but not make the problem go away. As Dolly said, it is *VERY* similar to Gender Identity Disorder and was in fact named to reflect the similarity (Body Integrity Identity Disorder)(Wylz went to the source for that information: transabled.org/thoughts/an-email-exchange-with-dr-first-about-biid.htm ) . I know of several people who have both GID and BIID. You are not seeing this on this board, because of the nature of the board, but there is a huge percentage of peple with BIID that are also devotees. I would say over half the transabled people I know are devs as well. This suggests a relationship between BIID and devoteeism. I have **no clue** what that might be, and I feel strongly that there is a big difference between the two, and also that you can have one and not the other, but there is a relationship there somewhere. Up to the psys to figure out what it is (and perhaps the neurologists as well).
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Post by rorschach on Apr 17, 2007 4:54:04 GMT -5
I do not seek to change the minds of anyone here. I am posting this to state my position on the issue. I feel that there is a lot of anger toward us and I believe that communication will help us build understanding and better understand each other.
I am a transabled individual. I am also a devotee. I'd like to begin this by apologizing on behalf of the community. There are many of us who engage in morally questionable acts. This aspect of the community has, as I have grown to know it, become quite a bane to me and at times has led me to question my affiliation with the community.
I'd also like to apologize for the misunderstanding that is present. I can assure you that the transabled by no means intend to harm, undermine, disrespect, or mock the disabled. In an abstract sense we share a similar burden. I am not trying to say that it is the same however suffering, like happiness, transcends all of the barriers that humans erect between themselves both physical and mental.
As I am sure the disabled resent their condition, I too resent mine. If I could quite having these feelings and live without them I would in an instant. Yet there is no cure for my condition, my only option is to live with it and suffer. Currently my condition is not even medically recognized, nor even known of in many circles. As such I have no hope for a cure. Pretending is my only relief. It is the only time when I actually feel normal as odd as that sounds.
BIID is, in my experience with it, is not an easy or fun experience. It is a painful and incessant struggle. One wrought with guilt, shame, secrecy, alienation, and feelings of inadequacy to say the least. It is something not easily accepted even in the normally open minded psychiatric realm. I have had friendships suffer and gone through serious bouts of both anxiety and depression because of this mental disorder, and physically bear the scars to prove it.
Pretending, though my experience with it is limited, is by no means a “vacation”. As I have aged I have come to realize that, what you regard as a despicable hobby, is for me shelter from the storm. It is not part of a sexual fantasy. It is not a ploy for attention. It is not a willing mockery of the disabled, though it may be perceived as such. It is, for me, a fleeting emotional analgesic. It is living life as I truly want to live it. It may be odd, however, when I look at this from a rational standpoint I can not see a negative effect on society and thus I find it to be, despite its deviation from social norms, an ethically sound activity.
I recognize that there is a lot that I am missing about truly being disabled by pretending, and that there is a lot that I truly will never know about unless/until I am disabled. By no means do I believe being disabled to be a “walk in the park” so to speak. I recognize that it is a painful and incessant struggle with which I have very little familiarity. Despite all of this I ma intrinsically driven to be disabled.
I did not chose this. I can not control this. If I could I would be rid of this. Pretending is my only sense of relief. I hope that this helps you understand my point of view on the issue.
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Post by Triassic on Apr 17, 2007 8:37:18 GMT -5
Very well put, rorschach and Claire. And interesting point, Claire about the overlap of BIID and devoteeism.
I'm curious about what using a wheelchair MEANS to pretenders. WHY is it so fulfilling and relaxing.
That's what interests me about crossdressers; obviously, wearing women's clothes MEANS something to them. And they tend to wear hyper feminine attire, right? Lingerie, dresses, accessories...crossdressers could just as easily wear less emphatically feminine stuff, but the ultra female attire has MEANING to them.
That's what pretenders should do examine closely what satisfies you about pretending, what doesn't and WHY.
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Post by Claire on Apr 17, 2007 14:03:10 GMT -5
You know, I have to go on record as stating that I am uncomfortable discussing this here. The thing is, I'm a dev. I came here because I like to know that I'm not the only female paradevo in the world and also because I like to know that there are wheeler guys who think it's not only OK, but actually cool, to be a paradevo. I love that. But, wheelers who made kind comments on my thread about devos as predators may not have been so kind to me if they had remembered that I first introduced myself here as a wannabe/devotee. I'll admit, that kinda hurts. But every time someone brings up pretenders (which thankfully isn't often) I feel compelled to answer because of the magnitude of the misinformation and misunderstanding that's out there. So as long as questions are being publicly asked, I'm publicly answering, and clearly have a lot to say, but if anyone who is really interested in a conversation about this wants to go private, or go elsewhere, that is fine with me, just PM me. And that goes for *everybody*, even those who have a major problem with it. I'll always welcome an intelligent discussion, and am not prone to flying off the handle. Very well put, rorschach and Claire. And interesting point, Claire about the overlap of BIID and devoteeism. Thanks. It's something that is pretty widely accepted in other devotee circles. I'm curious about what using a wheelchair MEANS to pretenders. WHY is it so fulfilling and relaxing. The wheelchair is a tool that helps in role play. Role play is a common method of therapy for many kinds of psychological conditions and BIID is no different. It's not really about the wheelchair, but the body image. In my case, my legs just *feel* wrong, there are times when their presence drives me nuts, they are supposed to be still and unmoving. Just like the transgendered person who believes they were born in the wrong body, or whose brain is telling them that they should be other than they physically are, my body also feels wrong. I've had this feeling since I was at least 5 years old, and for most transabled people the memories go back to early childhood. Now the WHY of *that* is a mystery to everyone. I don't know. Some say it's psychological. Some say it's neurological. Some say it's neuropsychological. It's up for grabs. But back to why wheelchair use feels so fulfilling: for one thing, using a wheelchair allows me to get around without using my legs, which in itself is a relief (in spite of the fact that wheeling is difficult, I have a shoulder injury, I am getting stuck in snow, access issues and all the other crap transabled.org/thoughts/nor-snow-nor-ice-nor-bitter-cold%e2%80%a6.htm - a bloody freaking horrible day!). But just sitting in it in my office had very little effect on me after the first couple weeks. It's not enough to just sit there and wheel around a 12x12 space. That's not role playing, that's hiding. I wanted to get out, to wheel in wide-open spaces, to find out what it's like to have to use a wheelchair in everyday situations. And yes, I know I'll never *really* know. Ever. Not the tenth part. I don't even know how much I'll never know. But I do know that I'll know much more by going out into the world than by sitting alone by myself in a room. When I first brought up pretending to my psychologist, she said that she thought that it was an excellent idea. She said that's very similar to what she tells the male patients who want to dress up as a woman. Go to a town where nobody knows you, do that, get some relief for a time. She also said that she thought it was necessary for me to do that to get a better idea of what I wanted, and that I would see how difficult it was to have to use a wheelchair, and that it would help me to change my mind about this. And act as a deterrent from self-injuring (SORRY, it must be said, this happens ). So I did it ( transabled.org/thoughts/trial-by-fire-day-i.htm ), and far from changing my mind, it only reinforced the fact that I felt better using a wheelchair than I did walking. It's quite simple really. Instead of being plagued by constant obsessive thoughts and not being able to concentrate fully on what is going on around me, I simply live the experience and go about my daily life. The obsessive thoughts go away, the constant nagging ( transabled.org/thoughts/it-taints-everything-it-touches.htm - transabled.org/thoughts/missing-half-my-life.htm ) and mental anguish disappear and I can just *live* and pay attention to what is going around me and enjoy myself, or even be totally freaking pissed off at accessibility issues but at least I'm not obsessing in some mentally ill way. I just feel mentally healthy when I wheel. I would much rather choose mental health over physical health and convenience! Who wouldn't? I came back and told my therapist this. She expected me to say "It was such an eye-opener, I hated it!" But I said "It was such an eye-opener, I loved it, I want more!" It's a bit addictive, I will admit. And the day after I get home from a pretending trip, I experience a severe depression, a longing to return, a wishing that it didn't ever have to stop. But after a day or two things reassert themselves and I find myself much better able to handle transabled thoughts and obsessions, I feel more "normal", more stable. It relieves the pressure. And when it starts to get bad again, then I have another trip to look forward to, and that too helps to manage things. 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. So I have her recommendation and blessing, but no parking permit, no wheelchair paid by the government, nothing like that. I have a job, I pay taxes, I'm not going on any kind of assistance and I have not the least interest in doing so. I don't know anyone with BIID who does. It's not about that. Hmm...long answer to a short question! That's what pretenders should do examine closely what satisfies you about pretending, what doesn't and WHY. And I think they also need to look at moral issues. The biggest question is "are you doing anything that will negatively impact the next wheeler to come along?" That is my code of ethics, and that of Ahiru, and Sean, and the other pretenders that I am personally friendly with. I've talked to others that I have serious issues with, but that's maybe another discussion. I'll admit, I've made mistakes. I've done things that, upon retrospect, I won't do again. It's a learning experience, but I am doing my best to not only live up to that code of ethics, but take it one step further: act in a way that will positively impact the next wheeler to come along. I have a mentor in this, a wheeler (with a genuine physical impairment), a girl my age with CP, a friend of mine for the past 10 years who only found out 6 months ago that I have BIID. We talk about these issues and she helps me steer clear of bad situations and that in turn helps me advise other pretenders who don't have the benefit of the perspective of a person with a physical disability. As for what satisfies me about pretending, it's just going about daily business in a wheelchair, role playing the normal everyday life of a wheeler for a time. What doesn't satisfy me is a lot of attention while I'm wheeling, I just want to go about my business and have people leave me alone. I enjoy interacting with some people, but not with others, and have found being the center of attention utterly mortifying ( transabled.org/thoughts/going-to-church.htm - another bad day, and one of the days where I made a mistake I hope never to make again). Hope that answers your question.
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Post by Ray T on Apr 17, 2007 14:56:54 GMT -5
I have a question... If BIID is an Illness what did, people do before wheel chairs were around. What we know as a wheel chair has only been around for less than 100 years I think the disorder has more to do with wanting the attention that being in a chair brings than it has to do with body image what do you all think? I know I get a lot of attention when I am out and about (I have a T-10/12 S-Incom. SCI) having a SCI it is mostly unwanted attention. However I can see how that someone that could go home and be able to get out of the car and walk inside might want the attention. To me it would be like having your cake and eating it too. The benefits of a Disiability without having the pain, suffering, and aggravation that goes along with it... Just my opinion... Nevertheless, I would like to hear what all you guys and gals thing about it?
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Post by E on Apr 17, 2007 15:16:17 GMT -5
I was reading one of the articles you linked to (the story about your struggles going to mass) and noticed this said in a response:
"80 to 90 percent of disabled people are raped, often within the first year or so of injury"
That's really disturbing. Is there any way to verify this?
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Post by Sean on Apr 17, 2007 15:26:33 GMT -5
Coming out of hiding for a moment. Ray T, you must have missed everyone that has been pointing out that it is NOT about attention. To paraphrase someone on this very board who said it better than I did, "I'd rather be using a wheelchair alone in my home than receive the positive attention of 10,000 people in a stadium, while walking". It is NOT about attention. It is about being able to be yourself. @creative-E, I think that quote is a bit misldeading. I believe that the author of the comment didn't mean *sexual* rape, but the kind of rape where people intrude in one's personal (and previous) space. People reach out, grab you, grab your wheelchair, try to push you around, etc.
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Post by Ouch on Apr 17, 2007 19:26:19 GMT -5
The wheelchair was theoretically invented 300-350 years ago...at least in its modern form (and I'm using that liberally).
What Claire has said, is rather interesting to me...because some of the things she has concerns about, are echoes of what we as 'physically disabled' have...like the 'unwarranted attention' that she seems to despise...as well as accessability issues, etc.
While, true, a 'Pretender' will not be able to experience disability as 'we' experience it; perhaps because of their needs perhaps they can be considered more symphathetic to our challenges, even if they don't face them in the same manner.
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Post by Claire on Apr 17, 2007 20:28:01 GMT -5
I have a question... If BIID is an Illness what did, people do before wheel chairs were around. What we know as a wheel chair has only been around for less than 100 years I honestly don't know but I would imagine they suffered in silence with no relief in sight. This disorder was all but unknown until the advent of the Internet and the ability for people to anonymously get together and discuss similar experiences. Trust me, it's not something that is easy to tell people. I would also say that most likely with absolutely no relief valve in sight, they were more quick to deal with the problem by self-injury, with no one the wiser. I think the disorder has more to do with wanting the attention that being in a chair brings than it has to do with body image what do you all think? That's the first conclusion that everyone comes to, but it's too simplistic. It's too easy, and it's a convenient way to diss the whole phenomenon as frivolous. I used to think it was about attention myself. I was raised in an atmosphere of parental neglect while I witnessed younger cousins with physical disabilities (twin boys with CP) get all the attention they needed. For a long time when I first started to try to understand my feelings, I believed that was the cause. But I was ignoring some early childhood memories. I have memories of pretending to have legs that didn't work that pre-date my ever coming into contact with these cousins. I was doing this before any of that ever happened. Once shortly before I started pretending I was walking along a bike path through the woods alone, and the desire to be in a chair on that nice smooth bike path was so strong, and I was alone, no one present to witness it. And I realized that I had lots of moments like that. Then I started pretending and I knew it wasn't for the attention because I didn't like the attention at all, but I wanted to wheel more and more.
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Post by Claire on Apr 17, 2007 20:28:50 GMT -5
"80 to 90 percent of disabled people are raped, often within the first year or so of injury" That's really disturbing. Is there any way to verify this? I have asked her for the source of this info and will pass it along when I get it.
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Post by Claire on Apr 17, 2007 20:42:05 GMT -5
experience it; perhaps because of their needs perhaps they can be considered more symphathetic to our challenges, even if they don't face them in the same manner. Windrider, I see the world in a **whole new way** now. I never realized that my local chinese restaurant, the dry cleaner's, the flower shop, my favorite shoe store and the CIBC Bank (to name just a few) are totally and completely inaccessible, until I had spent a few days in a chair in a different town. Now it pisses me off every time I drive by them.
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Post by Sean on Apr 17, 2007 21:51:43 GMT -5
The wheelchair was theoretically invented 300-350 years ago...at least in its modern form (and I'm using that liberally). The question is interesting. Body integrity identity disorder includes people who want/need to be paraplegics, blind, deaf, amputees, and a number of other condition. There is a case cited in the literature of a man requesting, and later acquiring an amputation, and saying he was quite happy about afterwards, as far back as 1785! Considering that it isn't until very recently that the life expectency of post-spinal cord injury people became "acceptable" (more than a few years), the questions does beg to be asked, were there also transabled individual desiring paralysis way back then. BIID has been better known (under that name or other labels) only for the last 10, 15 years. It was first formally classified (albeit wrongly) by John Money in 1977. At the time, it was believed the condition included only people requiring amputations. Yet, it is now clear that the condition applies to people requiring a broad range of impairments. This is a question that is unlikely to be completely answered, as there simply isn't documentation of "cases" going that far back, except that one mention made in a 1785 publication. While, true, a 'Pretender' will not be able to experience disability as 'we' experience it; perhaps because of their needs perhaps they can be considered more symphathetic to our challenges, even if they don't face them in the same manner. Thank you for that. I think that the "disability experience" can be separated into two broad types of experiences: The emotional stuff, and the physical stuff. The physical stuff would include logistical problems of accessibility, hardware acquisition, etc. In terms of these day-to-day issues of wheeling, I postulate that transabled individual who regularly use a wheelchair can have as good an understanding as any other wheeler. In fact, as someone who has been living 100% of my public life as a wheelchair user, I'd suggest that I *know* and understand and share the issues. I obviously don't have the physical experience of bowel/bladder dysfunction, but in some ways, i think those issues, while physical, fall more in line with the emotional category. As far as emotional stuff, while we don't have the same frustrations, we have similar onces. A para might have intense emotional issues with the fact they can't walk. I have intense emotional issues with the fact that I'm not paralysed. It's a different focus, but i suggest that the emotions are quite similar. my 2 cents
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Post by Triassic on Apr 18, 2007 3:54:55 GMT -5
I think it's an interesting topic. And really very obscure. If devoteeism is little known, BIID/pretending is WAY unheard of by the public.
But...I get no real sense of what it all MEANS to a pretender; what SIGNIFIGANCE does disablement have for you. It obviously resonates strongly with you(the pretender); something profound is going on when you Pretend. But no one so far has been able to really articulate that.
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.
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Post by devogirl on Apr 18, 2007 9:43:38 GMT -5
As for the historical aspect, even though surviving and living for a long time with SCI is a modern phenomenon, there were other conditions that caused long-term paralysis, most notably polio, CP, and stroke. Not to mention various other ailments lumped together under vague terms like "palsy" that could cause a person to become "bedridden" or "lame." We just have different names for diseases now. Also among the repressed Victorians, "nervous disorders" were very common, especially among women, and could lead to psychosomatic paralysis, among other things. (Squinting in particular, and other nervous tics) I'm not saying these people had BIID in the way we understand it today--they were reacting to very different psychological pressures. The way we understand physical conditions are so different today, even more so for psychological disorders, it's very difficult if not impossible to see connections historically. 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.
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