Now that I’ve had the time to actually sit down and go through Sean O’Connor from the Transabled website’s accusations against my opinion on BIID, I can actually explain a bit more about my “unique perspective” on being a disabled man in a wheelchair, who is also transgendered. I’ve been accused of being chickenshit, not posting comments (server problems prevented that) and having no comprehension of mental illness. Let me share my own thoughts on Sean’s response and how I feel I am qualified to speak out about BIID.
Sean says, “I don’t expect everyone to support BIID, but in truth, you can’t “disagree” with it. BIID is real.”
I believe that statement is all in the eye of the beholder. If a schizophrenic saw purple dinosaurs, I’m sure they would insist those dinosaurs were real, too. Don’t get me wrong. I do believe those who claim to have BIID have some mental disorder, but is BIID truly real in the sense that those who have it cannot be fixed without becoming disabled in some form? That remains to be seen. At the present time, I’d say no. I say no because those with BIID use the fact that brain scans show that their brains are different than the average, non-disabled human. That’s great, but that doesn’t signify BIID. It could signify any of the many mental conditions out there.
For instance, my son has both Bi-Polar Disorder and Asperger’s Syndrome. His brain scans are not the same as the average, non-disabled individual. Likewise, neurobiofeedback is showing remarkable progress in the changing of brain patterns and structure with many involved in this therapy actually improving and brain scans showing that their brains are reshaping to be more like the average brain. This also allows more functionality of the individual.
With this in mind why couldn’t neurobiofeedback be something those who believe they have BIID looked into as an option? See, those who are transgendered do not have this option .The difference is not in there being something different about the brain of the transgendered individual. In utero, the brain actually forms as male or female. Studies are showing FTMs don’t have (for lack of a better word) abnormal brains. They have normal, masculine brains. They just happen to be in the wrong body for what their brain signifies. Something like neurobiofeedback simply won’t change gender in a brain because there is logically, nothing wrong with the brain.
My biggest problem with the transabled community is not that I cannot acknowledge these people need mental help because they do. My problem is with their method in going about it. They refuse to accept any other explanation for what they have other than that it is BIID. They believe their only cure is to become disabled. While they say they’ve tried alternative therapies I have to ask, have they really tried? Prescription medicines can alter the brain’s perception, so there has to be a medicine to help with this because this is supposedly a disorder of the brain. Furthermore, if the condition was listed on the DSMV, the doctors are most likely going to try and treat this with a medication. I don’t feel those in the transabled community have portrayed this as being a viably acceptable option. For some, it seems it is there way (make me disabled) or no way.
I don’t believe any of them have truly tried to change through therapy and medication. I know it’s hard. I have watched my son struggle throughout his life. His entire life is a struggle, but he doesn’t stop living just because he is different. We’re all different and we all have to do what we can to adapt, disability or not. On that front, I believe my son is miles ahead of those who are transabled, many of whom are three, four and maybe even five times his age.
It took us years to find exactly what would work for our son through therapy, medicine, and what we could do at home to make him more productive and better able to control himself and his behavior. It takes time to find what is going to help. Had my son just said suicide was the only answer and given up it’d have been a disgrace considering the caring, hardworking young man he is slowly turning into thanks to his commitment to his treatment.
Sean says tranabled people have a NEED to become disabled. That could be their mind playing tricks on them. Cutters have a NEED to cut themselves. It’s still not good for them. Child molesters claim they have a NEED to rape/molest young children. Let’s just accept their explanation and let them run rampant. Just because someone believes they “need” something doesn’t necessarily make that need sane. Hacking off a body part is not sane. Shoving stuff in your ears or eyes to become blind or deaf is not sane. Making yourself paralyzed is not sane.
I must agree with Sean when he says, “BIID does not create a logical “desire” to be disabled. It’s not logical, it’s not rational”.
That doesn’t mean you should all get to cut off your limbs. It means you need psychiatric help you aren’t seeking because you seem to only want the psychiatric help you want (i.e. doctors to make you disabled).
Sean also says, “I’ve lived full time as a wheelchair user for well over a decade. I’ve suffered the indignities of being offered to be lifted into restaurants, carried into busses, being unable to get to a toilet in time, refused jobs, the list go on.”
This is how he explains he understands my disability. That doesn’t make him understand. It makes you a pretender Sean. Get real! You could not possibly comprehend the true life of a disabled individual. You CHOOSE not to get up out of the wheelchair. Those of us who are truly disabled in a physical capacity do not have a choice.
You lie to people to gain sympathy and parade around like you truly are disabled. It’s not like that because most disabled people think, every day, “if only I could take that step”, or “if only I could make it into the bathroom, myself”. We don’t want to be disabled. We merely accept it because we are and there is no sense in wasting time crying about what we can’t do. Still, the desire to do something an able-bodied individual can do never goes away, just because some days it would make life SO MUCH EASIER!
Sean claims his mental disorder is more debilitating than most disabilities. In his own words:
“I am less functional as an AB that is dealing with the anguish and pain of BIID than I would be as a para without BIID.”
You CHOOSE not to function. My son is 13 years old and he’s learning to adapt. It’s not easy, but every day he has to make the choice to be a functional part of society or to wallow in self-pity about all the things he cannot do on his own or without help. Some days he chooses self-pity and later regrets all of the things he missed doing for the day because he was busy feeling sorry for himself. Most days, he chooses to be a productive member of society, does what he has to do for the day (homeschool and chores), so he can enjoy the rest of his day doing something he wants to do. It’s nice to see he’s ahead of grownups on this one. It makes me feel his mother and I are doing something right in the way we’re raising him.
As for why this is offensive, why don’t you go tell a bunch of mothers who have children with Duchenne Muscular Dystrophy or Spinal Muscular Atrophy that you have a mental condition that makes you want to be disabled in some physical way and see how much sympathy you get. It’s offensive because I have friends who died of Duchenne waiting for a cure to make them not just walk, but make them LIVE! I bet you would not get a lick of sympathy from any of these parents. In fact, they’d agree you are MENTAL, but not agree with your desired treatment methods.
Furthermore, saying “Removing a limb because of BIID is no more wrong than removing a cancerous limb. BIID is killing us slowly,” is offensive to those with cancer. I bet if you told it to a family friend of mine who is sick with brain cancer he’d disagree. You have a PERFECTLY GOOD LIMB. The cancerous limb might have to be removed, but opening them up can spread the cancer. It’s not comparable at all.
Moving on, you simply cannot compare this to oppression of people because they are of a different race. People who are black never said, “I’d rather be dead than be black”. They worked their asses off to get the rights they deserved. Furthermore, your 52% of Americans survey isn’t accurate either because I’m betting over half of them would ADAPT if they truly became disabled. That’s what people do. They may think they don’t want it, but the prospect of death is far scarier to many then living as someone in a wheelchair once it really comes down to it.
I do know the difference between Devotees, Wannabes, and Pretenders. I was actually referring to an article I wrote on the subject. This is a bit harsher than my last article merely because I’d just found out about this and it is pretty alarming to read about people:
1. being so obsessed with crutches, wheelchairs, etc. that a devotee won’t be in love with the disabled human being but their wheelchair will get them off (so they lie to date the disabled person)
2. going out in public and pretending to “get” what it is like to be disabled (again lying)
3. wrapping legs up in dry ice to become paralyzed then lying about how it happened to get state benefits for a physical disability
If this is such a NEED why haven’t you just made yourself disabled, risk or not? Seriously, there has to be enough information on Google to do it on your own. Still, you sit online and whine about how a surgeon won’t do it for you instead of just doing it yourself.
When I spoke about the “it” that is not accepted, I meant the transabled community. It is easier to accept a transgendered person than a transabled one. I have nothing against being disabled myself. It is who I am and while I’d love to one day walk again, if I couldn’t it isn’t going to make me depressed or stop living life. Nice interpretation of what I said though.
Mentioning Brandon Teena doesn’t really help your argument. Brandon did not deserve to die, but he does have some blame in the events that led up to his death. Brandon was denied treatment because he didn’t fit the criteria for treatment as a transgendered individual. We do have RULES for becoming transgendered for a REASON. Brandon went to a hick town, knowingly lied about who he was and ended up getting killed because of his stupidity. Nobody deserves to die that way, but he’s hardly a transgendered martyr or even a role model of how to transition.
Transgendered transition only HURTS families if they let it. If it does, the family was dysfunctional to begin with. A truly loving family eventually accepts the transition. That’s just how loving parents are. Being transgendered isn’t something you earn just by saying you are. It isn’t earned, it has to be proven. BIID hasn’t been proven, so you can say you “NEED” this and you “NEED” that all you want, but I bet if I went in and said I NEED hormones give them to me doc, I wouldn’t be receiving treatment for transgederism. This is part of why we have to go through at least THREE MONTHS of therapy just for the hormones and an additional year for surgery.
There is no “my only options are transition or death”. That’s the first way NOT to be allowed to transition. You do have to be of sane mind and all. If I had to live pre-op forever, I could because I choose life over death. It is a very nice benefit for the surface details of who I am, but my penis and my hormones do not make me a man. I am a man and was a man without them and before them. This brings up the major difference between transabled and transgendered.
If you are just like us then pretending could be enough because you “get it”. You say you know what it is like to be disabled, but you and I both know you don’t Sean, because you’re not satisfied with pretending forever. It’s just not good enough for you and you selfishly want more. Being a man is who I am and knowing I’m Dominick is satisfying enough that if I stopped transitioning tomorrow, I could survive.
You bring up illegal, black market surgeries and I should tell you I disagree with them. If you can’t follow the rules to become transgendered then you shouldn’t get treatment. That is how the DSMV works. I don’t know one transgendered guy who has had illegal surgery, so it must not be happening as frequently as you think.
I could go on and on and touch on all the points you’ve brought up to try and present a logical argument for why the transabled community deserves to be made disabled, but there really is no justification for it.
I fully support you all get the metal help and benefits you need, but accept what help is given not what you feel you deserve to be given. I do not support those who make themselves disabled taking away benefits from the physically disabled community. You don’t get the same benefits for being in a wheelchair as you do having a mental illness and since you choose to have that physical disability you should choose to take responsibility and pay your own way.
Technorati Tags: Sean O’Connor, transabled, transgendered, BIID, Body Identity Integrity Disorder, mental disorder, DSMV, cancer, comparisons
Last 5 posts by Dominick
Fail.
I agree to some of your arguments. But BIID is a real problem. Transabled.org is a minority under us. Less people have the idea getting disabled much more people need a body change. That´s the story behind BIID. So please evaluate your arguments proper.
As a person who has friends who are truly disabled, I applaud you, Dominick. Your words are well thought out, and drive your point home. I agree that BIID may be a real problem, but there are other ways to deal with it than for a person to make themselves disabled. I haven’t met a person who is truly disabled that does nothing but wish they weren’t. My stepmother has CP, and she tells my father and I to “suck it up and deal with it” when something goes wrong. She is one of the strongest women I have ever met. She, like you, has adapted and is living her life.
Well, here is the thing… Do you really think that people with BIID *want* to have it? You make it sound like they want to hold on to having BIID when, in fact, it’s the opposite. If there was another solution or a way to get rid of it, we would. If there was a magic pill to make it go away, I’d take it in a heartbeat.
But because there’s so little research done on BIID, that kind of progress keeps hitting a brick wall (hence the movement for BIID to be included in the DSM, so research efforts can really get underway). The only proven solution so far is surgery; nothing else has been proven successful. That explains why so many of us feel the need to achieve our respective disabilities. I really wish there is another way out, but the truth is that there is no known way out so far.
However, the paragraph I just wrote above is a near carbon-copy of what the transgendered community had to go through before sex-change operations came about. Even if the eventual result of BIID research is not “ability-change” operations, I don’t really think you have a right to judge something that you (and, quite frankly, a lot of us with BIID) don’t fully understand, just because there just isn’t enough information out there.
I don’t expect you to sympathize with us or anything like that, but rather asking you to fully do your research and realize that we don’t want BIID any more than you want to be transgendered or disabled; to react in anger to us in this way is akin to us reacting strongly against you being transgendered.
I have a transgendered friend who knows about my BIID, and he knows exactly what I mean; he didn’t ask to be like that, and knows that neither did I. Criticizing someone for being something they don’t want to be is just not cool.
Dear Gordo,
The point is not, that you WANT to have BIID. The point is, that there HAS to be a better treatment for it than amputation or spinal cord severing. I have read part of Sean’s attack on Dominick’s response, and find it to be mostly a character attack, much as I have been attacked on another forum, on which I posted my opinions.
I have also read accounts of people who HAVE gone through with amputations, and of their partners. And, wow, if I were that partner, I would leave on the spot. Instead of cowering in a corner and “respecting” somebody’s right to assert ownership of their own body by dismantling it, these cowering idiots ought to say: you keep your fingers/arm/teeth/toes AND me, or I go. Don’t expect me to be your caregiver when you cannot brush your own teeth, I would tell the wannabe.
It is one thing for society to accept people who are so because they must be: black, indian, chinese, paralysed, deaf, or homosexual. It is quite another for people to assert themselves through dismemberment. Yes we are all individual, regardless of whether we belong to a majority or to a minority. I know that. I do not need you to show me your individuality by dismembering yourself.
Would it be useful for people with BIID to found a society for aid for individuals in third world countries who do not have the access to braces and wheelchairs that would help them to function? Yes, I hope BIID gets recognition so that research can be done (though, let me tell you, the medical industry does not want to heal anybody). Ultimately, though, it is up to each and every one of you to “sublimate” your condition into something fulfilling for you and for the people around you.
Yours,
Janelle
Janelle, that’s so true…there HAS to be a better way. There must be, somewhere. However, it hasn’t been found. We keep being told “you need help” or to go *get* help as if we haven’t been looking, but here’s the thing…WE DON’T KNOW WHERE TO TURN! I’ve been to a medical doctor, a psychoanalyst, a psychologist, a psychiatrist, a behavioral neurologist, and talked to another psychiatrist on the phone, exchanged emails with another psychologist, and talked to a sociologist as well. NONE of them have any idea how to treat BIID. I don’t know who to go to, what to do. It’s depressing and demoralizing to keep hearing “go get help” and not have any idea where that help can be gotten, nor can the person saying that tell me where I can actually go to get help. It’s so easy to say, “go get help”. The problem with just “getting over it” is that it’s a mental illness, the very hallmark of which is its obsessive nature. It grabs hold and won’t let go. It can’t just be turned off.
Also, the argument that BIID shouldn’t exist because other people do have physical disabilities and wish they didn’t is completely irrelevant. As unfortunate as that is, having BIID has nothing to do with other people. I have BIID regardless of whether some other person is paralyzed and wishes they weren’t. The two circumstances are not related to each other. The fact that some other person is unhappy being paralyzed does not make my BIID go away. Some other person’s state of health doesn’t change whatever neurological, chemical or psychiatric problem is going on in MY brain. I’m not sure why anyone would think it would.
Dear Claire,
I am very glad to get a rational response from someone on the other side of this condition.
First, I think there is a huge tangle with the body-modification community. See, if you were to go through with an amputation/paralysis, you would not be doing it for reasons of fashion or self-assertion. To treat your condition would be different. Still… I read something yesterday on the web, and I hope you don’t mind if I paraphrase it: If a child-molester/rapist/burglar/etc goes through with what they feel they need to do, we do not pardon them on the basis of mental incapacity.
Actually I do _not_ believe in punishment, and do _not_ believe imprisonment is a solution to _anything_, in almost any case.
See, society has not really found solutions even for the pedophiles and rapists, or for people with cancer, or for the mentally ill. In itself, there is nothing wrong with the people — it is like someone with a brain injury since childhood, who can never learn to read. Some people never learn to understand the difference between a (societally dictated) consensual and a non-consensual situation. For whatever reason. That still does not make it excusable to traumatize someone.
What I am trying to say here is, that dismantling oneself is no less serious than doing so to someone else. People pay millions in lawsuits if they are the cause of somebody else’s injury. I was reading on (medfiles) or something yesterday, that some doctors recommend “to accede to the will of the patient” in these cases. That alarmed me to no end! A non-disabling solution has to be found for you, just as badly as it has to be found for cancer patients, aids patients, etc. I would not count on medicine or psychology or psychiatry to find it. … Although the research ought to be at least partly their job.
I really know nothing about your condition, but here are some things I might try in your position: Decorate the limb with jewelry that is comfortable and pretty, something that catches your eye positively. Paint it with safe body-paints. Camouflage it to look like part of your jeans. Or paint flowers or animals on it. Or a holiday motif. Or flags of various countries. Use it in the most creative way you know — ride a bicycle, make pottery (I don’t know whether it is an arm or a leg) — just find something you love to do, which you could never ever do if you lost that limb or the ability to use that limb (due to paralysis). Photograph it. Paint an image of it. Sing. Play music. (Maybe Dominick can tell you how even singing is different for him, just because he cannot shift his weight in the same way as someone without a disability.) But it has to be something you really love, not something that anyone has told you or forced you to do, so that you have absolutely no resentment doing it. Take note of all the things you do with your limbs every single day: pushing off the floor with your toes, bending your knees, adjusting your position, going to the bathroom, washing and stacking the dishes, bringing someone a glass of water, watering the plants, hanging up your own clothes, going for a walk, taking a shower whenever it is right for you, getting a drink of water or something out of the fridge exactly when it is right for you. Cooking, going for a hike, catching the bus, turning on the radio, getting exactly the right volume, writing, typing, petting a dog…
Or: Find out the financial costs of the surgery and counseling that has to do with it, and the cost of assistive equipment you would then require. And the cost of living, which you may or may not be able to cover with a disability. Calculate that cost over a lifetime. (Ask someone who really has the disability.) Reward yourself by purchasing something for yourself with part or all of that money. Reward your family or community or planet by helping someone who involuntarily has the condition you desire. Get to know that person if possible.
And work on positive sensation: warm water, warm earth, cold earth, tiles, skin, fruits, vegetables, playing blocks, wood, trees, leaves, bed-sheets, satin, leather, felt, velvet, knobbly balls (sometimes used for physical therapy) — all the things you can feel in that particular way, just because you feel like it.
Study your condition yourself.
I am just making up this list. Do not take it as a command. Definitely wing it — you do not have to stick to any or all of what I say.
The fact that somebody else is paralysed does not change your BIID, but it does let you project on what your life would be like in that position: A person who is paralysed cannot just go for a walk in the woods without lots of prior arrangements. Cannot just hop on the bus and hop back off. Depending on the level of paralysis, some cannot even go shopping for groceries or clothing without assistance. And the list goes on. and on. and on. It is not just the things that CAN be listed, but the things you and I cannot even think of — feeling the inside of old, trusted shoes, or new shoes, … … even if it is “just” an arm, you cannot walk with the same gait any more, or have the same grace and balance (although you might do pretty well). Back problems due to any imbalance in the limbs. The ability to stretch and to use even the muscles that would not be affected by amputation or severing of the spinal cord. Circulatory problems. And on, and on.
It is really stupid, that our society is the way it is. Cancer patients are sometimes offered no solution but to amputate limbs and organs — while alternative medicine and nutrition have cured some cases without such drastic measures. … I have had several treatments by doctors, resulting in further injury. Only a few of the doctors I have known have done something to help. I could give you tons of examples of my own body… Here are a couple:
(1) After my car accident in 1984, I was only able to wear sneakers and hiking shoes. My mother was “worried” that my feet would spread or grow too big. In addition to this, I was an economically-conscious child and did not ask for more than I needed. I knew mom did not have a lot of money, so I asked for shoes only when I really, really needed them. So I got used to wearing way-too-small shoes. At the age of 15, I received a pair of hand-me-ups from a cousin. They were not only too small, they cut into my achilles tendon. I wore them anyway. I got an ingrown toenail. At the age of 21, I took a size 7 1/2 when I shopped for shoes. I got an ingrown toenail again at the age of twenty, and two ingrown toenails when I was 21. When I went to the doctor for the first time, he wanted to cauterize parts of my toenails. I allowed him to cut, but not to cauterize. He suggested I at least change my shoes. I refused. When I went to him for the second time when I was 21, he talked disapprovingly of my previous decision, and told me my toes were too fleshy and they would keep getting infected every six months if I did not let him cauterize them. I let him. Now I have daily pain, even if no infection. I have eventually begun to wear shoes that fit — 8 1/2 to 9 (US — 39 or 40 European), but the pain is still there. So the doctor had a solution for me, that only made me suffer for life.
(2) I had a mole (nevis) on my arm since the age of two. It had always been raised, always the same size, never changed color, never bled, never hurt. My mother hated it. She abused me anyway, but by the time I was 18, she had latched onto this mole as my only flaw and told me she would finally love me if I only let it be removed. A doctor actually agreed to do it, although he labelled it elective surgery and told my mom over a series of visits that it was not necessary. So now I have a scar and no more mole. I miss my mole, I never wanted to have it done. The doctor knew I did not want to have it removed, but did it on my mother’s request and my acquiescence.
(3) I had that car accident. My elbow was crushed and my humerus was severed. Doctors operated on the elbow for four and a half hours, but did not bother to set the humerus, which would have been a simple task. A new humerus grew up to the little piece at the top. It is less dense than the original. The original humerus degenerated into a hook on my new humerus. For years and years I went to doctors, who told me it could not be removed. Finally a doctor in India removed it for me last year. (so there are some doctors who will help) — but the whole condition would have been avoided, had they set the bones and/or inserted a plate to begin with. The new humerus is painful to this day — I can use it in a slightly limited way, and cannot lift or carry anything heavy with the arm (both because of the elbow, which could not have been done better, and the humerus, which could have.)
(2) I did not get any nails in the humerus, but two in the elbow. Three months or so later, when they were coming out, the doctor pulled out the first with no trouble. He grabbed the second one with his tongs-thing at the wrong angle, and I started to tell him that it was the wrong angle. He pulled hard anyway. He tugged for over ten minutes, with me screaming. My mom did not intervene for me. The doctor did not know me — he did not know that I was not a screamer. Over ten minutes later, he changed the angle of his own accord. — And I was forced to let him keep being my doctor because I was a child and was not allowed to decide for myself.
(5) Doctors removed and threw away a piece of loose bone in my skull. Actually, if a bone is removed at all, it is supposed to be embedded in the abdomen, where it remains alive until reimplantation. Mom wanted me to have surgery to replace it. I was not excited at the prospect. Doctors said it was more a matter of choice than safety. This was 1985-1986. After that no doctor ever looked at my head. In 1996, my mother met a new doctor in our area. He had to operate on my sister for a brain tumor. Then, as a favor to my mother, I visited this doctor and asked him about implanting something in my skull. He agreed immediately, although he said it is not the best time for an operation because I was about to go to college. I posed questions to the doctor about any risks. He said none. When it was all done, my facial muscles on the left could hardly move - and the doctor said it might not get better. (And this was not a “risk”?) The implant is itchy and uneven, has weakened my facial muscles to the extent that I cannot even smile like before, and has caused problems in concentration and control over remaining awake.
(6) My arm was in a huge cast. I was not given a sling, but had to ask for it myself. The doctors pretended not to even know what a sling was, and finally concocted one out of tubular bandage, tied at my neck. When I complained of neck pains, they told me to grin and bear it. Now I have a permanent kink at C7 — although this showed a marked difference from my x-rays immediately after the accident, the doctors there and all the doctors I have met since have told me it is simply normal. I do not know anyone else who has such a kink.
(7) Dad put me on a starvation diet while I was living with him. I developed anorexic symptoms such as facial hair and skipping periods. The gynecologist was more than happy to force me to have a pap smear and to check whether I was pregnant — two procedures you NEVER do with a virgin. The facial hair accompanies me to this day. It is not a hormonal problem — my hormones have been measured by endocrinologists on several different occasions and they are as average as can be.
So these are several examples of doctors who were willing to take me apart or to cut me open or to stick their hands in my vagina for no good reason — but no doctor can really make you whole. Your health is yours. You are and always have been its best keeper and guardian. Medicines and treatments do not make a person whole.
And, now that I have all these conditions, partly caused by medical treatments, there are some things I cannot do for myself, and some things I cannot do as well as before, and I have not been able to hold a conventional job, and I have not been able to get a proper diagnosis, and… the very people on whom I was dependent as an ill child did everything in their power to destroy anything I built for myself. So — life has no guarantees. Sick and injured people are rarely treated with the dignity they deserve. For every time you are helped the way you ought to be helped, you are ridiculed or stepped on many times. It does nothing to a person to be ridiculed once or twice or ten times — but quite a lot to be ridiculed by loved ones, or by anyone, over a very long period of time. When one is always in the weaker position, you are always likely to be a target. Like Dominick said, we survive it because that is how it goes, not because we like the condition in any way. I am luckier than Dominick in that I can get up and get something off the shelf, or take a walk in the woods if people wait for me, or travel overseas by myself and need relatively few accommodations.
Really, sorry about the rant. I know this is too long, and maybe too personal. I do not know whether anything I have said is personal. Feel free to keep writing here, or to my e-mail mymoof at yahoo dot com.
Claire,
Another thing — some people are physically or mentally addicted to all kinds of drugs. Tests can prove that their body or their psyche has the need for that drug. That still does not mean it is all right for them to continue having that drug on demand, especially if its effects are debilitating them or destroying their relationships.
I am not a great friend of the war on drugs, but nor am I a friend of taking drugs. This is only meant as another example of the best treatment not being what the people say they need.
I made this association because you seem to be describing your condition as something that takes hold of you and does not let go — like an addiction.
By the way, the second sentence in the last paragraph ought to read “is too personal” instead of “is personal”.
Yours,
Janelle
PS Re: Sean’s hard on due to wearing diapers: When he really becomes disabled, he may not be able to have a hard-on at all: http://medfriendly.com/paraplegia.html
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Claire,
See, you bring up some interesting points. Do you think those of us who have “diagnosed” conditions just get treatment and everything we need without a fight? You say BIID is a “mental condition”. I’d have to agree that it is some sort of mental disorder.
As I mentioned previously, I believe those with BIID need mental help. I DON’T believe the answer and only answer is surgery to become disabled. Since research is pointing towards something in the brain (and I could see something being skewed in the body image portion of the brain - like it is in anorexia) then some sort of medication that alters the brain’s perception should be able to eventually help.
I agree that research is needed to find out what that medication is. I also believe work with a behavioral therapist, to work on behavioral modification is a potential asset. That’s just based on my knowledge of psychology alone through my own personal experience, the fact my girlfriend is almost with her psychology degree, and the fact my son has had a psychologist for years.
All I hear from the BIID community though is “our only solution” is to be disabled. Doctors will have to “modify” us to be disabled or we won’t be healed. Honestly tell me that most of you aren’t hoping that doctors decide that making you disabled is a viable option because from what I’ve read, it seems to be acceptable to make yourself disabled, no matter the cost.
Being disabled is one MAJOR fight. You will never understand what its like by “sitting in a wheelchair”, being stared at in public, or wearing diapers. Just because doctors know that I have Spinal Muscular Atrophy doesn’t mean I don’t need to fight for treatment, assistive devices or anything else I need.
You’re not special because you aren’t getting treatment. It’s YOUR responsibility to be proactive in your own treatment. Demand of your doctors that they give you the help you need. Research different medications and treatment options. You’d be surprised how many medications used for one thing might actually work for another. Case in point, depakote is being used for bi-polar, epilepsy and shows promise in increasing muscle strength in those with my disability (SMA).
That’s what the web is for and many of us with disabilities use it to FIND the answers to what kind of medications may work for us. Those of us who have disabilities wouldn’t get anything if we weren’t proactive and didn’t demand care. Doctors don’t always like to help unless they already know the answer to a problem.
My biggest problem with BIID is that you compare yourself to being transgendered. I don’t see a comparison at all, sorry. Especially the discussion about “wearing diapers” and how it excites sexually (yes, there was a mention of diapers giving hard-ons). Sorry, but nobody I know who “dresses up like the sex they feel they are” gets sexual excitement from that. In fact, the entire transgendered process isn’t exactly sexually stimulating, nor is it done to get us off.
I also don’t agree with the fact that you think your only solution is to become disabled, and that once disabled, you have the ability to take state benefits away from those of us BORN with disabilities. It’s hard enough getting a wheelchair when you’re born with a disability or when you have an SCI. To have those who make themselves disabled lying about how they become disabled and taking these scarce services away, quite frankly pisses me off.
The whole pretending thing is also something I don’t like. Those of us who are disabled show camaraderie with one another because we are disabled. We all know what it is like to “truly” be stuck in a wheelchair. I’ve found myself constantly questioning whether people I see in wheelchairs really are disabled or whether they are fakers because I now know about your community of liars. I don’t want to share my struggle with a faker who only “pretends” to understand and yet they get excitement from the fact I’m pouring my heart out. Been there, done that and it’s not fun finding out that a person LIED about all their struggles or how they got in a wheelchair, at all.
If you want to be taken seriously, stop hiding on the web, reveal your true identities and stop lying to people. If you’re pretending don’t lie to those of us really in a wheelchair and make up an injury. Say you have BIID and leave it at that. Lying is harmful and I know many of you hide because you know that you’ll lose friends by coming clean, but that’s your fault for not telling the truth initially.