Something shocking and creepy, deaf wannabes, pretenders and others

[Tousi]

That's right; they would, upon release from the hospital, throw the processor in the trash can of the parking lot! $60,000.00 for the privilege of becoming deaf! Indeed!

 

[jillio]

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.

When I referred to Munchausen's, I was referring tothe post by someone else regarding a friend's behavior specifically.

What you are referring to is not diagnosable under DSM-IV (TR) criteria. The closes the DMS comes to diagnositic criteria for a disorder such as the one you describe is body dysmorphic disorder. However, the disorder,as described does not meet all of the criteria necessary. Thee is also conversion disorder, but neither does this meet the criteria for conversion disorder. Actually, this would fall more into the category of unsepcified personality disorder. If an individual truly want to be disabled, then having a mental illness certainly puts them into the category of disabled. However, as mental illness is also an invisable disability, these individuals seem to be more concerned with having a disablility that it visable and recognizable as a way to manipulate others and gain attention for themselves. These are very disturbed individuals. Threatening harm to oneself by creating a disability in oneself is sufficient grounds to commit.

 

[jillio]

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.

You are assuming correlations that probably do not exist. A wheelchair is not what you need to treat this disorder. Intense psychotherapy and most likely medication is what is needed. You have a mental disorder, not a physical disorder.

 

[jillio]

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

BIID is not diagnosable by DSM IV-TR criterion. That is not to say that you do not have a mental disorder; quite obviously you do. You have encountered an unethical therapist. The use of a wheel chair in no way addresses the deep seated reasons that you find it appealing to be disabled. You are most likely suffering from a personality disorder that gives you an overwhelming need for attentionand pity, and it only manifests as the desire to be disabled because you seee those as disabled receiving more attention and pity that the non-disabled population. You have a narcissistic desire to be the center of attention.

My reference to Munchausen's and hypochondria were in reply to another poster's reference regarding her friend's behavior, not to the disorder from which you suffer.

Pretending thereapy is not a theoretically sound nor commonly used treatment technique. Perhpas you were drawn to this type of therapy because it gave you permission, however misguided, to continue in your behavior. What you need is extensive psychotherapy and most likely medication.

 

[jillio]

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.

Actually, there is treatment that can reduce and control the obsessive thoughts. You simply have not engaged in finding that treatment.

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.

You are using discussion groups for a treatment that should be undertaken by a psychiatrist, or at the best, a psychiatrist and a clinical psychologist working in tandem.

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?

That is your problem. Your disorder is one of a mental disorder, and you desire for it to manifest as a physical disorder in order that you be recognized as disabled by the general population, thus putting yourself in the position of receiving attentionand sympathy from others. Generally known as a narcissistic personality disorder.

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.

The same can be said for any disorder that involves obsession and compulsion. All are treatable. Int he case of this BIID, however, chances are great that you have several concomittant disorders: personality, OCD, and anxiety.

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!

Once again, this is a mix on concommittant disorders, not a disorder in and of itself.


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.
You want more studies for the same reason that you want to be disabled. Since this is not a diagnosable disorder in an of itself, research dollars will not be spent in researching something that doesn't exist. There has been suffiecient research done on the number of disorders that are comorbind in any such individual, and therefore, there is established protocol for treatment of each of them.


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.
Your mental illness does not require that you make use of resourcedc intended for those with a disability of a physical nature. Your disability is of a mental nature, and the resources you need are of the psychiatric variety.


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.

You do not suffer from a physical disability,therefore, there is no justification for utilizing resources intended for those who do. Simply wanting to suffer from a physical disability as the result of a mental disability is not justification for utilizing these resources. Utilize the resources that can acutally treat your disorder: mental health resources.


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.

You need treatment designed to address not just self esteem issues, but the personality disorder,a nd the OCD. You are not neurotic, you a seriously mentally ill.

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.

Being in a wheel chair is not being yourself because you have no physical need for the wheel chair. It is about presenting yourself as someone you are not in order to manipulate others.

 

[kvinnemarie]

*Sigh*

All this because I started a blog.

I really don't care if people like me or if they don't. I'm only after my own peace of mind and contentment in life. I also don't care of people think I'm crazy or stupid or insane. People email me and post comments to my blog calling me those things. It doesn't bother me.

Some people think that deaf people who don't want to hear are crazy and some deaf people think I'm crazy because I don't want to win! I guess I can't win...

It does make me sad because people pass judgement about me (and people like me) without knowing anything or making any attempt to understand. Why do people want to make decisions for me? Why can't I have personal liberty and a chance to decide for myself what I want to do to my own body?

If anyone wants to have an intelligent conversation I will respond candidly to email. kvinnemarie@yahoo.no is the mail...

 

[Claire_C]

Jillo, you must have missed the part where I stated I've seen three mental health professionals, all of whom told me that there was no treatment for BIID. I have also seen a neurologist who believes it has a neurological cause: a problem in the parietal lobe of the brain concerned with body image. I have also been in email contact with two other mental health professionals who have done studies on BIID who have no treatments to suggest. Your suggestion to find help is great - please give me the name and phone number of the mental health professional that you recommend who has had success treating this condition.

I am sorry but BIID does exist. Do some research. When it shows up in the DSM-V you'll know. The editor of the next version of the DSM, Dr. Michael First, was the person who actually coined the term Body Integrity Identity Disorder and has done one study on it and is about to conduct a second. You can Google that and find out in 1-minute's research to see that it's true. I'm afraid I'll have to take Dr. First's word over yours, until you at least provide your credentials.

 

[jillio]

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.

Actually, you are incorrect. Mental disorders are treatable.

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.

A surgeon amputaing a limb is not treating the disorder, it is acting out onthe pathological obsession created by the mental disorder. It is a part of the disorder in and of itself. Treatment is psychiatric, not surgical. Physican's are prohibited form asssiting a suicidal patient in committing suicide,as well. It the same thing.

 

[jillio]

Jillo, you must have missed the part where I stated I've seen three mental health professionals, all of whom told me that there was no treatment for BIID. I have also seen a neurologist who believes it has a neurological cause: a problem in the parietal lobe of the brain concerned with body image. I have also been in email contact with two other mental health professionals who have done studies on BIID who have no treatments to suggest. Your suggestion to find help is great - please give me the name and phone number of the mental health professional that you recommend who has had success treating this condition.

I am sorry but BIID does exist. Do some research. When it shows up in the DSM-V you'll know. The editor of the next version of the DSM, Dr. Michael First, was the person who actually coined the term Body Integrity Identity Disorder and has done one study on it and is about to conduct a second. You can Google that and find out in 1-minute's research to see that it's true. I'm afraid I'll have to take Dr. First's word over yours, until you at least provide your credentials.

Then you are seeing the wrong metnal health professionals. And if the disorder does indeed have a neurological cause, then amputating a limb will not stop the obsession, as it originates in the pathology within the parietal lobe. The parietal lobe would still be intact, therefore, the obsession would recurr.

The parietal lobe is responsible for unilateral neglect. That is an entirely different syndrome. The next version of the DSM has yet to be published, and it will be some time before it is published. What you describe, as I have indicated in a previous post, falls into the category of body dysmorphic disorder. That diagnosis is normally made when one seeks out excessive plastic surgery in order to correct what they perceive as unnatractive in their own appearance, despite the fact that their physical appearance is normal. They are simply unable to perceive their appearance as normal, and therefore, seek to change it. However, as your wish is not to change your appearance, but to actually engage in a procedure that would render you disabled for the sake of being disabled, it is quite likely, as I said prior, that you have several concomittant mental disorders at once.

I find it extremely difficult to believe that these health profssionals recognize this disorder, yet have no recommendations for treatment.

And if you want my credientials, they are LPCC, CRC, NSC.

 

[RobinF]

What you are referring to is not diagnosable under DSM-IV (TR) criteria. The closes the DMS comes to diagnositic criteria for a disorder such as the one you describe is body dysmorphic disorder. However, the disorder,as described does not meet all of the criteria necessary. Thee is also conversion disorder, but neither does this meet the criteria for conversion disorder. Actually, this would fall more into the category of unsepcified personality disorder. If an individual truly want to be disabled, then having a mental illness certainly puts them into the category of disabled. However, as mental illness is also an invisable disability, these individuals seem to be more concerned with having a disablility that it visable and recognizable as a way to manipulate others and gain attention for themselves. These are very disturbed individuals. Threatening harm to oneself by creating a disability in oneself is sufficient grounds to commit.

BIID will likely be in the DSM-V when it is released. Beyond that... There is no help out there. We all try meds, we all try therapy, often with multiple different therapists over the years, multiple therapy modalities, lots of different meds. Few people have found anything that helps. If you know something that helps, I'm listening. Other than that, we do the only things that each of us can find that helps (and therapists are supportive of this more than you seem to think, given the options available).

 

[jillio]

BIID will likely be in the DSM-V when it is released. Beyond that... There is no help out there. We all try meds, we all try therapy, often with multiple different therapists over the years, multiple therapy modalities, lots of different meds. Few people have found anything that helps. If you know something that helps, I'm listening. Other than that, we do the only things that each of us can find that helps (and therapists are supportive of this more than you seem to think, given the options available).

Any threapist that supports amputation is in violation of ethical guidelines.

Exactly what therapies and meds have you tried?

 

[RobinF]

Any threapist that supports amputation is in violation of ethical guidelines.

Exactly what therapies and meds have you tried?

Not amputation for me, given my specific need, that's not what I was talking about. I was referring to pretending, which many therapists support (given that it's often the only thing to help at all, I think this makes sense). Have tried CBT and a number of 'talk therapy' therapists (don't know if there's a technical term for that...). Meds-wise have tried a number of antidepressants in various categories, and a number of antianxiety meds. None have been helpful BIID-wise.

 

[jillio]

Not amputation for me, given my specific need, that's not what I was talking about. I was referring to pretending, which many therapists support (given that it's often the only thing to help at all, I think this makes sense). Have tried CBT and a number of 'talk therapy' therapists (don't know if there's a technical term for that...). Meds-wise have tried a number of antidepressants in various categories, and a number of antianxiety meds. None have been helpful BIID-wise.

Pretending,as well, does not treat the mental illness, but only gives the client permission to continue in the pathology. This is not an accepted treatment for any form of mental illness.

Cognitive Behavioral Therapy, as well as the talk therapies, are dependent uponthe client wishing to uncover the reasons for the behavior, and thus to change them. Perhaps you are unwilling to change your behaviors. You seem to be quite comfortable in your current state, and are receiving benefits for your behavior. Thus, your reluctance to give them up.

 

[Dixie]

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.

You could find you a shade tree surgeon in Mexico and then sell all your unwanted body parts to the black market research for cold hard cash.

 

[jillio]

You could find you a shade tree surgeon in Mexico and then sell all your unwanted body parts to the black market research for cold hard cash.

LOL! There's a practical solution for you!

 

[Claire_C]

Well, I'm done here. Jillio, you seem to be the epitome of intolerance and closed-mindedness. You did not offer the name of a therapist capable of treating the disorder nor did you comment on the very real fact that the editor of the next DSM is the person who coined the term BIID, which seems to me to be a crucial point in a discussion on whether BIID exists or not. But I imagine that you've done absolutely no actual research on the subject because you don't appear to be very knowledgeable at all about BIID - either that, or you've done the research and have independently come to conclusions that contradict the majority of the body of formal research done on the subject. I don't care either way, but whichever of the two it is, I'm not interested in discussing it with you further.

Within the wheeler community I have found a lot more open-mindedness, tolerance and understanding that I have here at alldeaf.com. I'm frankly surprised, and saddened, and on that note I say adieu to the deaf community.

As Marie said, if anyone would like to have an open-minded discussion I can be found at transabled.org, just click on the "contact" link.

 

[wylz]

Jillio,

You are working from many assumptions that are just that. Preconcieved notions. This is not bad per se, but it is also fairly representative of the uphill battle people with BIID have to fight.

There are no real studies to back me up on this, though it has been mentionned in several studies (which you can find listed on Main Page - BIID-Info.org if you can be bothered). Treating people with BIID with OCD therapies does NOT work. This is of course based on anecdotal evidence, experience gathered from a number of individuals with BIID. There's also cognitive behavioural therapy that's been tried on many people with BIID, and to a person, they all report that the CBT has helped them in many ways, but has left the BIID completely untouched. I find your claim that CBT is not effective just because we don't want to change quite offensive, really. I would MUCH rather not suffer from BIID.

You're right, BIID isn't in the DSM. As Robin and Claire said, this is likely to change. The fact that a condition is not currently in the DSM does not mean that it does not exist, and does not mean you can explain the condition by trying to pigeonholing it into currently listed conditions in the DSM.

Pretending,as well, does not treat the mental illness, but only gives the client permission to continue in the pathology. This is not an accepted treatment for any form of mental illness.

My transsexual friends will forgive me here, but... Pretending and eventually surgery are actually the recommended treatment options for Gender Identity Disorder. If you argue that GID is a mental illness (as shown by the fact it's in the DSM), then your argument doesn't stand. If you say that GID isn't a mental illness, then, BIID is also not a mental illness, as both conditions are so closely related (again, according to Dr. Michael First, it's not just me saying this, but a recognised expert in the field of psychiatry. Actually, several experts in that field).

BIID is not quite the same as Body Dysmorphic Disorder either. A major difference here is that in BDD, people generally perceive their attribute as being wrong, when in fact it's not, it's just a question of erroneous perception from the BDD sufferer (obviously grossly generalised). In BIID, we are fully aware that our limbs and body are perfectly normal, they just don't fit in with our body image.

Any threapist that supports amputation is in violation of ethical guidelines.

Are they? Are they really? It's interesting you say that. There has actually been a fair bit of writing on the topic of "ethics" as it relates to BIID. Bain & Levy (again, found on Main Page - BIID-Info.org) suggest that it is actually inethical to let people with BIID suffer.

The way *I* see it, it's a bit like chopping a leg off for someone who has cancer. On the face of it, it's doing damage to the body to remove the limb, but it's in fact saving the patient's life. BIID is like a cancer, it eats us up inside. And while the only evidence that surgery works is anecdotal, that evidence is in fact pretty solid. It is not our fault that researchers have opted NOT to actually study those invididuals who have successfully achieved their desired body image.

I find it extremely difficult to believe that these health profssionals recognize this disorder, yet have no recommendations for treatment.

And I find it extremely difficult to accept that so many people are so deadset against us becoming what we need to be. Granted, for many people with BIID, they have no real clue of what it's like to have such an impairment. But then again, for many of us, we do. I have lived well over a decade as a full time wheelchair user. I was married to a paraplegic woman who knew about me (before you ask, we didn't split up, she died). I worked with and for people with disabilities. oh, abd BTW, I sign, too, not because I want/need to be deaf, but because many of my friends are. I'm FULLY aware of what it is I'm after, as aware as anyone without an SCI can be, and probably better aware than many people in the medical field.

What is it about disabilities and impairments that society fights so hard to prevent? Isn't such denial of surgery as a treatment option a way of saying "disabilities are negative"?? But I digress.

As for the medical professionals who recognise the condition but have no treatment option to offer... The majority of medical professionals are completely out of their depth with BIID. Then there have been those who tried different treatments, but nothing's worked. The conclusion is: the only form of treatment that we know for a fact works is surgery. But we get denied that. So since nothing works but one thing, and that one thing isn't being offered, the medicos have nothing to offer.

I've tried many things to "get rid" of BIID. I've been on a variety of drugs (a list too long and boring to list here), with no result. I've been in therapy for years, and yes, I do have a real desire to understand where my "booboo" comes from, but understanding doesn't heal, doesn't solve. I've tried a variety of therapy styles. NOTHING WORKS.

So please, Jillio, check your professional assumptions at the door and make your sweeping statements once you're better informed, and keep an open mind about it. Because until then, there's no point continuing talking. It's like having a discussion with a brick wall otherwise.

 

[Kaitin]

I haven't read most posts here because many were confusing to me. Maybe others understand better, but I don't.

One reply said to read at "transabled.com" and I read the first page. It says

"So you'll ask: "That 'thing', transabled, just exactly what is it?". It is hard to define in just a few words, the best way to learn is by going through the site, but in a nutshell, someone who is transabled "wants" to be disabled."

Honest, I don't understand. Can someone please explain more why you want to be disabled? Or need - as the first page said? I don't mean to be arguing, offensive, or negative, but I am confused. What is the need? Attention? Low expectation? Help? Pity? Being different than others? Something about wheelchairs? Again - sincere questions and without meaning to be unfriendly.

I have never read about being needing to pretend (is "pretend" right? other word?) to be with MS etc and use wheelchairs or other assistance. Sorry that I didn't understand earlier post and thank you to any explanation.

 

[wylz]

Honest, I don't understand. Can someone please explain more why you want to be disabled? Or need - as the first page said? I don't mean to be arguing, offensive, or negative, but I am confused. What is the need? Attention? Low expectation? Help? Pity? Being different than others? Something about wheelchairs? Again - sincere questions and without meaning to be unfriendly.

I think most of us welcome sincere questions from people who want to understand.

It is very difficult to understand. The only thing I can say is that, for me, it is a question of being myself. Like I was born in the wrong body.

It is not about attention. For a while, I thought it was about that, but realised that I would prefer to be paralysed and alone than to receive the positive attention of thousands of people. Besides, the attention you get as a person with a disability in our society tends to be negative attention, not something we want.

It is not about low expectations. If anything, someone with a disability has to be an over-achiever in this society of ours.

It is not about needing or wanting help. I just want to go about my business, without anymore (or any less) help from people than anyone else. I just want to be paralysed.

It is not about pity. Piss on pity.

It is not about being different than others. It is about being myself. Others do not come into play in this equation.

It is not about wheelchairs. Many people with BIID are not "into" wheelchairs. Many people with BIID need to be a leg amputee, and never even think about using a wheelchairs. Others need to be blind, or deaf (and I ain't saying Deaf either, because it's not about being part of a "culture").

The fact is, we can't really tell you why, or where it comes from, or what the reason for it is. There probably isn't one single reason for it, but a mix of many. There haven't been a lot of studies about the origins of BIID. It just is.

I hope this answers your questions, if not, please don't hesitate to ask more.

 

[Liza]

I see there is an entry at this website transabled.org about how being transabled is not a choice, like being gay is not a choice. That is a pretty strong point made in this website.