RedFox

I found something shocking, a group of people who want to or pretend to have a condition such as deafness and other people who are attracted to people with those conditions. They call themselves the transabled people.

What I found were a bunch of blogs by such people, plus a yahoo group for deaf wannabes. Someone already posted about that yahoo group around two years ago here. I found more than just deaf wannabes. On a blog by a deaf wannabe and pretender, I found links to other blogs by people like a blind wannabe and a MS wannabe. There's even a spinal cord injury pretender. The spinal cord one even has some creepy stories on her blogs with a character trying screw up her spine.

This really creeps me out. The blind wannabe wrote on her blog that she wanted to go blind by looking at the sun and thought about using lenses to make it faster, but her SO doesn't like that, so she wears special contacts to block her vision instead.

The MS wannabe's blog has stuff on going around in a wheelchair and clutches, even at work. She is even aware of what happens in MS, because it is the basis of her blog's name, demyelinate. It refers to how the myelin covering of the nerves get destroyed, likely by an autoimmune attack. She writes that she sometimes pretends to be deafblind, but feels that she is somehow meant to have MS. That creeps me out because I don't see how anyone could want such a thing to happen to them. It's also a waste of wheelchairs. 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.

The deaf wannabe's blog has stuff on her using earplugs made of cotton soaked in oil and blasting music into her ears with an Ipod and earphones, even at work. She also wrote about thinking about faking hearing loss on hearing tests to get a hearing aid sooner, even if she usually doesn't. That stills irks me. She's learning British Sign Language and wrote that she used to take ASL classes at NTID! I am sad and angry about my alma mater being defiled by such people. She also wrote that she posts to deaf forums, keeping the wannabe thing a secret.

The reason that particular deaf wannabe is like that seems to be related to her autistic spectrum condition and the associated oversensitivity to sound, which could be a reason for her saying that the earplugs she's using aren't enough. I wonder if there could be other reasons those people are wannabes, including creepy ones.

I hope that those deaf wannabes and pretenders don't waste interpreters and take them away from people who really need them.

I found another deaf forum with a thread about this and someone joined and copied a post about a hoh pretender who made friends with a real hoh person. What would happen if the real one found that the other one is a pretender? There, I also read of someone wanting to learn how to speak like a deaf person.

I also talked with a friend who's a transsexual and she was offended by those transabled people's frequent comparisons of themselves to transgendered and transsexual people because that's piggybacking themselves onto the other group.

What do you think of those transabled people? Should I post any links to those blogs? Actually, I won't need to because anyone can immediately find the deaf wannabe's blog with a Google search and find the other blogs linked to from there. What would you do if you found out that someone you thought was hoh, deaf or had some other condition like MS, was actually a wannabe and/or a pretender? What do you think of people attracted to those with such conditions?

Deafness

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PlateCafe

I saw on Dr. Phil's tv show, the woman pretended she had kidney failure. She even pretended she was on dialysis. But in real life, her kidneys are fine. She spent $20,000 on medical treatment and told many people she was dying. She lost 100 pounds, on purpose, by starving herself. And many people felt sorry for her. And they were willing to donate their kidneys for her. She said she did it to get attention. And she also lied about her education and people hired her. I don't know why people fake their illnesses. Here is an article,

Munchausen Syndrome: Those Who Fake Illness - Associated Content
Those suffering from Munchausen Syndrome battle a disorder that causes them to fake illnesses. People with Munchausen will fake and cause symptoms to be present for these pretend illnesses. Those with Munchausen Syndrome fake their illness to receive attention and sympathy from others.

Munchausen Syndrome patients crave attention from medical staff and will do what they have to in order to gain their attention, time and the privilege of continued visits. Munchausen Syndrome patients will go as far as to change medical-test results to prove their case. As one might imagine, those with Munchausen Syndrome have large medical bills. People who have Munchausen Syndrome, for some reason, have a need to be ill or injured to gain what they need emotionally. The pain of unnecessary tests and operations does not bother them as they are receiving the emotional benefit they crave.

Munchausen Syndrome may not be diagnosed for quite awhile as those who have these conditions are very deceptive. However, over a period of time and after much needless expense, medical personal will begin to notice the patient's medical histories as well as their records do not make sense. In addition any treatment, which has been prescribed, will not show positive results. Munchausen Symdrome patients will show great excitement at the prospects of having tests done for their new symptoms as well. Other symptoms a Munchausen patient may display are, continuous relapses, treatment at many medical facilities, negative results to many tests when there are constant and continuing symptoms, and refusal to communicate with medical staff concerning discrepancies.

No one knows for sure what is the exact cause of a person to developing Munchausen Syndrome, however, when a person has been abused either physically or emotionally they are at higher risk for developing the syndrome. There are other conditions that are thought to add to the likelihood of Munchausen Syndrome such as some psychological problems. These disorders include personality disorders, and depression. Because many who have Munchausen Syndrome have been abused, they may have a fear of being abandoned or may be unsure of their identity as well.

Those with Munchausen Syndrome go untreated for the condition many times because it is very difficult for them to admit they have a problem that must be treated by a psychologist. When a Munchausen patient receives help they must overcome the challenge of seeking medical attention when it is not necessary. Once they accomplish this, treatment is given to the underlying reasons for the syndrome.

RedFox

Munchausen Syndrome looks like a possibility. It reminds me of a suspected case of Munchausen Syndrome by Proxy at my high school where a sped student's mom dosed his son with sleeping pills during weekends to keep him from bothering her. Then during the week, he'd be sleepy in class and improve towards the end of the week, only to be dosed again. Alas, they didn't have enough evidence to do anything about it. She also noticed that I had an interpreter, thought of her as a mere aide and forced the school to hire one for her son.

This is the Wikipedia article that started my search on people like this. Here's the part on disabled people's views of this stuff:

The Borderline section is creepy. Then after finding that article, I wondered if there were any deaf wannabes, so I googled that and found the blog of the deaf wannabe and pretender, which linked to the other blogs I described before.

I also found another article about someone who wants to become deaf here. It says that the person has a poor sense of self and may be trying to use deafness as a way to build up one.

Another thing I saw on those transable sites is stuff about properly representing the people with the condition that they're pretending to have, apparently to get it right out of respect. I think if they want to show true respect to people with the conditions, they should do something to help them, like by donating to places that do that, instead of wasting resources like wheelchairs and hearing aids.

These people also claim to have Body integrity identity disorder. The article uses it to mean people who want amputations to feel whole, but the other transable people seem to use BIID in a more general way. They're trying to make it look like a legitimate thing to be treated in the manner they want it to be, like by becoming deaf.

I'm deaf because of this. If a transable person were to pretend to have or want to have this syndrome, I'd feel insulted because that syndrome can kill you and my elder brother died because of it. It cheapens it because they won't really have it and if they get tired of it, they can just stop pretending, which I can't do because it's encoded into my genes.

Dixie

Ive heard about the deaf wannabes and even made a couple of comments about them here on AD - unbelievable is my only reaction. Why would anyone want to be disabled and or otherwise ill? Why run up medical bills in the thousands if not millions for an emotional craving? It flat out disgusts me.

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Freaky Cat

i remmy back at my school- there was a girl who always said she is sick and have to go to infirmary. she also always go to dr and say one thing to another like headaches, tummy ache etc.. looking for attention. now shes doing it with her daughters.. i felt sorry for the girls..

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Dixie

I had a classmate that was like that, but her parents divorced and she moved and I havent spoken to her in years. But she missed some 13 days of school in one semester for illnesses that were not recurring but rather different illnesses or symptoms, such as one day it might be her stomach, the next day her back may hurt. I always felt that she was a little off.

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jillio

That could be hypochondria. With hypochondria, people really believe that there is something wrong with their health. With Munchausen's Syndrome, they know there is nothing wrong, but they fake it just to gain attention. Someone who has hypochondria might have a headache from stress, but they believe that it is a brain tumor....they take little symptoms and blow them out of proportion. Someone with Munchausen's won't even have a headache, but will learn about the symtpoms of a brain tumor and fake them. Or they will purposely do things like inject fecal material into their blood stream to create symptoms of an illness.

With your friend, if it is just hypochondria, she could be teaching her daughters the same behavior by the way that she treats them when they are sick with any little thing. But, if she is actually doing something to them to make them sick, then it would be Munchausen's by Proxy. Sometimes it is hard to tell the difference between the two. The biggest difference is the hypochondriac usually does have an illness, but they beleive it is much worse than it is......and someone with Muchausen's doesn't have an illness, but does something to themselves to make themselves sick. (Or to their children like Munchausen's by Proxy). And, Munchausen's can often lead to death unintentionally, so it is much more serious. People with hypochondria are just generally annoying with their constant complaints of not feeling well.

RedFox

That reminds me of some stories I read on the spinal cord injury pretender's blog. It's making me think that she's a wannabe too because those stories involved a woman getting someone to inject alcohol into her spine to paralyze her. Then she called the emergency number and went to a hospital, thereby wasting medical resources. There are also details regarding how to go to the bathroom when paralyzed. Another story had a wannabe commit suicide and moaned about how doctors didn't understand that they had an emotional need to become disabled.



Those people are nutty and need to go to a mental hospital.

jillio

Agreed. They really do need some intensive treatment, especially if they are doing these things to their children like in Munchausen's by Proxy. They are very confused and sick people.

Dixie

Any parent found to have Munchaunsen's by Proxy I do believe their children are taken in to protective custody and are only allowed supervised visits until the children reach their 18th birthday. But it is completely beyond me as to why anyone would want to harm their children in any way just for some emotional wants.

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RedFox

I found another yahoo group for deaf wannabes with an open archive, so I could read the messages without joining. There are some posts talking about damaging one's own hearing, like by blasting or poking them. Those people need to have their heads checked.

One person who posted there was an interpreter student who said that the stuff was appalling and a disease. One of the wannabes replied by calling the interpreter student intolerant and unwilling to listen to their reasons for doing it. But that wannabe didn't give any good reasons.

I found a post there about another yahoo group with a name that made it look like it was for pictures of deaf people. When I followed the link to it, I found that it was a members only adult group for pictures of the members wearing hearing aids or pictures of people they see out in town with hearing aids. I wonder if any of us have our pictures there without us knowing it. It seems to be some kind of fetish thing.

I was reading this stuff to try to find motivations they have for doing this. The deaf wannabe blog was by someone with an autistic spectrum condition who was oversensitive to sound, so I wondered if there were other wannabes who weren't like that. I found some people there who seemed to want to become deaf because they had lots of deaf friends and wanted to fit in. I thought you could be Deaf without being deaf. There also seemed to be plenty of people in the group who were already going deaf and wanted to make the process faster. They need some patience.

ASLGAL

These types of people pull you two ways - disgust and pity

Very strange and scary activity by the wannabee people.

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authentic

Those people are mentally illness, abnormal, and disgusting. I wish those people didn't give them a damn in the first place, and she would be like "I failed".

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jillio

Yes, the children would definately be removed from the parent's custody, but some of these cases continue for years before the parent's illness is detected. People with Munchausen's and Munchausen's by Proxy are very sophisticated in their medical knowledge. They actually study medical texts, etc. in order to present convincing symptoms.

Liza

Well we were warned if we masturbated we would go blind but we keep on doing it anyway! lol

That woman blogger Redfox mentioned needs to see a shrink asap. It is about her, not about the things she professes to have. Blindness, deafness, MS, etc. OMG!! She does not deserve our scorn, but our compassion.

But everything else.. can of worms, really. I say, to each one's own.. the world is colorful.

Liebling:-)))

Interesting thread... *nodding agreement*


Yes I second that. It could be hypochondria, they suffer... They need to go to see therapy.

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RedFox

That woman doesn't claim to have all of those. They're separate people. The deaf wannabe's blog is here. I noticed that this thread is now above her blog in a Google search for deaf wannabe. That blog links to the blogs of the MS wannabe and the blind wannabe. Then the MS wannabe's blog links to the spinal cord injury pretender/probable wannabe's blog, which even has a picture of her on the front page, that is if it's not ripped off from someone else.

Tousi

Liza, then I guess I became deaf instead....

Volcanbaru

Crap, I wish I could trade my deafness for their hearing!


*rip my ears out*

shel90

Let's hope these wannabe's dont try to get a CI surgery! Of course, they wouldnt qualify but imagine if they went to an audi's office and inquire about getting a CI. Now, that would make them deaf for sure.

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deafskeptic

Deaf wannabes? MS wannabes? Blind wannabes? oh me.

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morbid-mongoose

If someone BSed me like that, I'd be pissed.

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Kaitin

So well said that I can't add anything more.

RobinF

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.

RedFox

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.

Dixie

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.

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RobinF

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

Claire_C

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

doh

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.

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