- Joined
- Sep 14, 2006
- Messages
- 14,491
- Reaction score
- 2
Deaf wannabes? MS wannabes? Blind wannabes? oh me. 
Something shocking and creepy, deaf wannabes, pretenders and others
- Thread starter RedFox
- Start date
morbid-mongoose
New Member
- Joined
- Jan 24, 2007
- Messages
- 504
- Reaction score
- 0
peepingthoughts
New Member
- Joined
- Jan 21, 2006
- Messages
- 15
- Reaction score
- 0
Kaitin
New Member
- Joined
- Oct 7, 2007
- Messages
- 845
- Reaction score
- 3
Deaf wannabes? MS wannabes? Blind wannabes? oh me.
So well said that I can't add anything more.
To attempt to clear up a few things (not that I think anyone will accept this any better than you already do, but I'd still like to try):
- What we have is called BIID, not Munchausen Syndrome. There are significant differences there.
- You said "The blogger also wrote about being let onto the buses for free, no questions asked. This is nutty even if she has an unlimited pass that she doesn't bother to show to people.". This isn't me *trying* to cheat anyone out of anything, I do posses a valid unlimited-travel bus pass. I just made a comment that while using a wheelchair, none of the transit staff had ever asked to actually see it, which is unusual. The staff waving me through without asking to see it is nothing of my own doing.
- You say "It's also a waste of wheelchairs." Wheelchairs are not a finite resource, if I "use up" one, the company will make another one for the next person that needs one. They aren't an item where there's a waiting list or a shortage, so I don't see how i'm "wasting" one. My use to help with my BIID is no less valid than anyone else's use to help with anything else.
- "The reason that particular deaf wannabe is like that seems to be related to her autistic spectrum condition and the associated oversensitivity to sound" I have a similar autistic spectrum condition and am hypersensitive to light and sound, hence being functionally deafblind at times when around the house. Her having an autistic spectrum condition that is somewhat related to her need to be d/Deaf should make it easier to understand why she needs it, not less. Living with hypersensitive sense(s) would make anyone have similar thoughts, I'd bet.
Ok, then I'm wondering what the medical profession thinks of BIID and what treatments there are.
They apparently didn't ask you because you were in a wheelchair. I am wondering if you feel that you being in the wheelchair is of your own doing or if you have an overwhelming, uncontrollable feeling that you have to use one. I'd have the pass out anyway so people won't see you appear to board with no pass and think negatively about it.
Do you realize that the the accommodations for people in wheelchairs are finite? There are only so many places on each bus to put wheelchairs in. What if there was something like a fire? Would you want people to think you can't move well without the wheelchair and risk their lives to help you when you really can walk okay?
Again, I wonder about the treatments the medical and psychological communities would have for BIID and if that would include using wheelchairs if the person feels like they need one. I also wonder if they could detect signs of BIID on brain scans someday.
Why want to have multiple sclerosis? I'm sure many people won't want to lose myelin in their brains and spinal cords, resulting in impaired functioning.
I also wonder if there are any people who say they have BIID and want to have a condition that doesn't actually exist or would not permit life, like not breathing or having heartbeats anymore.
I wonder if there are treatments for hypersensitivity to sensory input.
- Joined
- Mar 22, 2006
- Messages
- 13,367
- Reaction score
- 2
To your last statement RedFox - there is treatment for hypersensitivity to noise and lights. It just requires alot of physical therapy to teach the brain to take in stimuli and not overprocess it. Basically they are trying to use various methods to re-train the brain's way of functioning and processing. I once heard of a 9 year old girl who has this same condition. She would shriek and scream for hours without provocation, until a neurologist discovered what was really going on. She starts her day at 6 am, and they have her go through varying excercises such as jumping on a trampoline for 30 minutes, then they do some resistance excercises and they just do just a little bit at a time. Then she goes to regular school at 8 am just like the other children do, but at 12:30pm she goes to a special center where she meets a physical therapist and nuerological therapist where the collaborate and they give her more therapy. The therapy had been taking place for about 18 months and now she is just getting to where she is acting like a normal 9 year old girl. So it's helping and there's stuff out there to help with oversensitivity problems. There isnt a cure, as this will be a lifetime process for the girl.
Not being in the medical profession, it's hard for me to answer that. Most people I've talked to in the medical field have been more curious than anything else, and have spent lots of time asking questions. I haven't had any really bad experiences with the medical community around being transabled. The best site for overall information on BIID I've found is Main Page - BIID-Info.org.
If there's a chance to show them my pass I always will. If they're waving me through (or holding a gate open for me in the case of light rail), I won't hold them up by getting my pass out, I'll just go through. I do try to show my pass whenever there's a chance to though.
I do realize this. There are two spots for wheelchairs on our busses (and one on light rail, but I don't use the dedicated spots there), and it's very, very rare to see even one of them in use. I've never had anyone denied access to a bus because I was using it. If it happens, it happens though. As I said before, I don't believe my need for a wheelchair is any less valid than anyone else just because mine isn't a physical need.
I never claim to not be able to walk, so the latter situation you're pointing out isn't an issue for me. I keep my forearm crutches with me when using my wheelchair, which makes it pretty obvious that I can walk short distances with them.
There aren't many treatments for BIID, unfortunately. A lot of different medications for anxiety, OCD, depression, etc. have been tried and pretty much none have been helpful much. Therapy can help get more insight into the feelings, but doesn't tend to actually help diminish them at all. About the only things that tend to be helpful are achieving the impairment you need (which isn't possible with some, like MS) or living your life as if you have it (as I do). So yes, using a wheelchair if you need one does tend to be the most helpful thing that people have found so far. Same thing would apply to things other than MS, people who need to be paras use wheelchairs, those that need to be blind use long canes, braille, etc.
There are very few studies about people with BIID, and I don't know of any around brain scans. It's very hard to get a sizable number of people with BIID to participate in studies, first of all because there aren't that many of us to begin with, and secondly because real-life studies have obvious anonymity problems. Most transabled people are extremely careful that their transabledness not get out, so meeting with people in real life for studies isn't something most of us are willing to do.
It's not something I have an explanation for, just how I am. 'want' isn't a good word for it, 'need' describes it a lot better. I agree most people don't and can't understand why I need this, and I don't even claim to understand it. It's just how I am.
I've not heard of anyone like that, pretty much every transabled person I've ever met has had a need for some condition that does exist and does permit life.
There are, but personally I've not found much that helps. I try to avoid strong light and/or sound stimulation (the latter being easier as I'm HOH) where I can, and spend time at home away from both of those, replacing them with tactile where I can.
-rf
Hello all.
I would like to make a few points that seem to be lost somewhere in this discussion.
Body Identity Integrity Disorder is a real illness. It's not Munchausen's (nor by Proxy) and it's not hypochondria. It's an inexplicable desire for disability that in the vast majority of cases goes back to very young childhood. (see http:/www.biid-info.org )
Someone asked what the medical community "thinks" of BIID and what resources there are. To be quite frank, there are NO resources available to sufferers of BIID because it is so rare that the vast majority of doctors and mental health professionals haven't heard of it.
A lot of people have said "those people are mentally ill, that's disgusting (or creepy, or whatever other derogatory term used), they should go get help." I agree, we are mentally ill.
However, mental illness is not "disgusting." I have a real condition. Having any kind of mental condition (be it BIID, or schizophrenia, or Alzheimers, or depression) doesn't make a person any more disgusting or creepy than you are for being deaf. We all have our issues. I have mine. You have yours. How is one person's health issue "better" than someone else's? Do you subscribe to the disability heiriarchy? It's ok to be deaf, but it's not okay to have some rare neuropsychological condition? Seems hypocritical to me.
Secondly, the vast majority of us have seen shrinks. The three that I've seen had never heard of BIID and basically all told me "I can't help you, there's no treatment protocol for that." That's not just my experience, that's basically the response we all get when we try to get help. It's not that we're not trying to get help. It's there there's no help available. We've exhausted all our resources.
That leaves us in a very difficult place. Feared and reviled and called creepy and disgusting, but nobody can help us. We live with demons in our head and the only way we have to still them is to pretend, or actually try to accomplish our desired disability.
Do a little research online and you'll find that BIID sufferers who have actually acheived their goal are in the vast majority very satisfied with the results and the obsession goes away, allowing them to get on with life.
Those of us who don't want to or can't go that route are left with pretending as the only way to deal with the obsession and feel somewhat mentally normal. I am still in therapy, and my psychologist is very supportive of my pretending. For those of you who have said we should "get help"...I did get help, and the help I got was for my therapist to encourage and support the only way I have ever found to deal with BIID...to use a wheelchair.
Pretending: therapy prescribed by psychologist » transabled.org » Blogging about BIID
I would like to make a few points that seem to be lost somewhere in this discussion.
Body Identity Integrity Disorder is a real illness. It's not Munchausen's (nor by Proxy) and it's not hypochondria. It's an inexplicable desire for disability that in the vast majority of cases goes back to very young childhood. (see http:/www.biid-info.org )
Someone asked what the medical community "thinks" of BIID and what resources there are. To be quite frank, there are NO resources available to sufferers of BIID because it is so rare that the vast majority of doctors and mental health professionals haven't heard of it.
A lot of people have said "those people are mentally ill, that's disgusting (or creepy, or whatever other derogatory term used), they should go get help." I agree, we are mentally ill.
However, mental illness is not "disgusting." I have a real condition. Having any kind of mental condition (be it BIID, or schizophrenia, or Alzheimers, or depression) doesn't make a person any more disgusting or creepy than you are for being deaf. We all have our issues. I have mine. You have yours. How is one person's health issue "better" than someone else's? Do you subscribe to the disability heiriarchy? It's ok to be deaf, but it's not okay to have some rare neuropsychological condition? Seems hypocritical to me.
Secondly, the vast majority of us have seen shrinks. The three that I've seen had never heard of BIID and basically all told me "I can't help you, there's no treatment protocol for that." That's not just my experience, that's basically the response we all get when we try to get help. It's not that we're not trying to get help. It's there there's no help available. We've exhausted all our resources.
That leaves us in a very difficult place. Feared and reviled and called creepy and disgusting, but nobody can help us. We live with demons in our head and the only way we have to still them is to pretend, or actually try to accomplish our desired disability.
Do a little research online and you'll find that BIID sufferers who have actually acheived their goal are in the vast majority very satisfied with the results and the obsession goes away, allowing them to get on with life.
Those of us who don't want to or can't go that route are left with pretending as the only way to deal with the obsession and feel somewhat mentally normal. I am still in therapy, and my psychologist is very supportive of my pretending. For those of you who have said we should "get help"...I did get help, and the help I got was for my therapist to encourage and support the only way I have ever found to deal with BIID...to use a wheelchair.
Pretending: therapy prescribed by psychologist » transabled.org » Blogging about BIID
doh
New Member
- Joined
- Jan 7, 2007
- Messages
- 313
- Reaction score
- 0
Usually avoidance. But also pressure on joints (very tight hugs or trampoline, heavy blankets, for example). Another type, the so called "Wilbarger Protocol" involves a hairbrush with soft bristles. (seems farfetched to me) another one involves looking at coloured lights...
I think most of those are for tactile issues and not for other senses. I would think that for photophobia it'd be far easier to use sunglasses, for hyperacusis earplugs and so on.
Liza
New Member
- Joined
- Apr 3, 2003
- Messages
- 4,355
- Reaction score
- 3
RobinF said:
I wonder how a person who physically needs a wheelchair would feel if it does happen. What would it take to enable people to see BIID as a valid reason to use resources originally intended for people with physical disabilities?
RobinF said:
People would still want to help, like by holding doors open when you use the crutches, like with doors held open by electromagnets that are turned off when there is a fire alarm. You'd still be somewhat slower with crutches. What if there was stuff falling from the fire making things collapse?
RobinF said:
If you haven't had bad experiences with the medical community regarding this, why be afraid of participating in studies? It's not like they'd publish a list of names of transabled people.
RobinF said:
I read here that people who like wearing leg braces are commonly in the age range that would make them young children when polio and therefore leg braces was more common. This suggests that such things are like imprinting, where a kid sees someone with something like a wheelchair or leg brace, then wants to be like that. This is also supported by the apparent nonexistence of people who feel like they need to have nonexistent disabilities or conditions that won't permit life. I bet that if anybody developed the technology to keep beheaded heads alive, there'd be transabled people who feel like they have to be like that.
In earlier posts, I linked to case studies, like the one of a deaf wannabe who had a low self-esteem and was apparently using deafness to build one. I'm wondering how many BIID people are like that. Some people might think that means such people have a desire to get pity and feel special. Is there anybody who feels like that?
In my previous post, I said that maybe it's from kids imprinting onto disabled people they've seen and wanting to become like them.
How do you know that most doctors and psychologists haven't heard of it? Plenty of people have heard of amputee wannabes because that had been on shows like CSI.
Saying that BIID is real doesn't make it so. There are tests that can show that people are deaf. How would other people be able to determine if someone has BIID? Pointing to a BIID site isn't enough. It could've been written by people with BIID. How about independent studies by non BIID people?
How can you show that the vast majority of them are happy if they achieve their goals? Are there any studies that do not relay on anecdotal evidence? Anecdotal evidence is not good evidence because it can be cherry-picked.
The issue with pretending would be the use of services meant for those who physically need them, like spaces on buses. Sign language interpreters and relay operators are finite resources. Would deaf pretenders want to use them up? If they do that, they'd degrade the lives of deaf people who have those resources taken away from them.
In an earlier post, I posted a link about a deaf wannabe who had low self-esteem. How many transabled people are like that? That is also mentioned as an attitude disabled people have towards transabled people here. Here, explanations by transabled people include feeling alienated from others and then feeling empathy for disabled people who are also alienated, then becoming obsessed with the disabilities. How about working on the feeling of being alienated?
I also wonder what transabled people would do if they were sent back to the Paleolithic Age.
Yes, that's fine. Maybe that's it. But there's still no way to make the obsession go away, to date. Even if we knew for sure that was the case, we still are stuck with BIID.
Because every professional I've ever talked to about it had never heard of it. Because on the BIID discussion groups, that is the case for the vast majority of sufferers. Because scholarly articles written on BIID by the few medical professionals who do so, mention that BIID is mostly unknown in the field.
How would other people be able to determine if someone has any one of a myriad of "invisible disabilities" or other mental conditions such as phobias?
BIID is determined by an obsessive and irrational desire for disability that goes back to early childhood. If you have that, you have BIID. Like many mental illnesses (such as depression, phobias), you can't "prove" it to anyone. Your behavior and what you say about how you feel is the only proof you can offer to anyone. BIID is not alone in not being provable by objective scientific tests, many common mental conditions are like that. That doesn't make it not real.
That is precisely the problem. There have been very few, too few. We want more. But it's hard to interest professionals in this topic because it effects such a small number of people and they want their research dollars to go where it can help a greater number of people (understandably). Thus, not much is going on research-wise on BIID. But I wholeheartedly support the concept of independent BIID studies. Bring them on!
I agree, and that is why we want more studies and we SPECIFICALLY want scientific studies done on these people. But so far, no one has conducted such a study. So we rely on anecdotal evidence. That's all we have. But there is something to be said for first-hand accounts.
I understand your point. But the issue there is in providing more resources for everyone who needs them. The issue is not that there is a very small population of BIID sufferers whose mental illness requires that they make use of some of these resources. The real issue is providing resources for everyone in the disabled community (and I am including mental illnesses in the disabled community here). Let's not refuse resources to those with mental illnesses, but let's work on improving the availability of those resources for everyone.
It is not fair to say "a person with Condition X needs a finite resource, so the person with Condition Y just has to suffer." The person with Condition Y also has a right, a real and undeniable right, to aid. People with BIID have a right to therapy. Right now, pretending is about the only therapy that anyone has found. I am open to other therapies that don't include pretending, except that to-date, there are none. Give me some options. Until other therapies are found, we have a right to deal with our condition the best way we can, just like anyone else does.
That is WAY too simplistic. If BIID were simply a question of self-esteem and a need for attention, it would respond to traditional therapies designed to address these issues. The fact is, it does not. You can work on my self-esteem all day and while I may feel better about myself, my BIID will not go away. If BIID were about self-worth, then explain to me why talk therapy has had so little success with treating BIID.
Besides which, as any person with a disability ought to know, you don't usually get positive, affirming attention from the majority of people who believe you to be disabled. They are either weird with you, or way WAY too sugary sweet, or try to help you when you don't need help, or stare at you like a beast in a cage. If my wanting to use a wheelchair was about self-esteem and attention, I would have abandoned the wheelchair long ago because the attention is far from positive most of the time. At best, it's neutral. But I continue to use the wheelchair, because it's about being myself, and not about how other people treat me.
I imagine we would be among the dead, along with a great many of other people with physical and mental disabilities.
ideafspy
New Member
- Joined
- Mar 5, 2003
- Messages
- 774
- Reaction score
- 0
it is interesting that you found that blog website.
It make me wonder where did you happen to decide and bump to find that blog?
I watch the television show about person feel that they shouldn't born with legs or arms even the fingers or toes. I think that strange to have person desire to cut or chop their body part to feel normal again.
It seems apply to disability issue but nature happen being Deaf that doesn't mean we do same thing on what people do.
We could like being as equal; however, we have pretty good journal than hearing people do. I know this point isn't about hearing or, vs deaf. My point that we have learned hard way to swim the stink river or cold river or whatever we face and we do what we can do it.
It not just being cruel and say, 'too bad and deal with it'. No hug yet, then the seed will grow being harsh.
It kind apply thing that seed and the water is mental illness got into seed and grow turn out weird image to do something their body.
It make me wonder where did you happen to decide and bump to find that blog?
I watch the television show about person feel that they shouldn't born with legs or arms even the fingers or toes. I think that strange to have person desire to cut or chop their body part to feel normal again.
It seems apply to disability issue but nature happen being Deaf that doesn't mean we do same thing on what people do.
We could like being as equal; however, we have pretty good journal than hearing people do. I know this point isn't about hearing or, vs deaf. My point that we have learned hard way to swim the stink river or cold river or whatever we face and we do what we can do it.
It not just being cruel and say, 'too bad and deal with it'. No hug yet, then the seed will grow being harsh.
It kind apply thing that seed and the water is mental illness got into seed and grow turn out weird image to do something their body.
I found it after reading the Wikipedia article about attraction to disability that I found by looking around there. So I wondered if there were any deaf wannabes and googled it, which gave me the link to the blog.
Many of us had normal childhoods so I don't think it's about having been abused or neglected as a child. That may be something to do with it but it doesn't explain why their are millions of abused/neglected children that don't grow up with BIID. Something else is afoot that goes beyond that.
I think you're bringing up another really good point. We're often told something like "I'm a paraplegic and I've learned to deal with it. Why can't you just learn to deal with BIID?"
That's an EXCELLENT and fair question. It think the difference is twofold. First, BIID is a mental illness, and paraplegia (or deafness, or whatever) isn't. Since our mental health is compromised and we're dealing with an untreatable pathological obsession, our ability to "deal with it" is also compromised.
Secondly, there is no "cure" for paraplegia (or other disabilities that are untreatable). But there is a very easy cure for BIID. All it takes is a surgeon's willgness to help and a rather simple, short, uncomplicted operation. So relief from our condition is JUST out of our reach, tempting us.
