#1. The guidelines for transitioning are necessary because there are some people who ARE not really transgendered. They just want to fit in. It happens in the GLB community, too. You know the people who either think its cool to be gay or bi or use it as a fad until they “miraculously” become straight again. I know a few people like that, who “experimented” and some thought they were gay, but they were really just desperate and lonely. The GLB community was accepting, so they clung to that acceptance. I’m not saying all or even the majority of people in the GLB community are this way, but it does happen.

The same is true with the trans community. Transition is a HUGE commitment. It is a lifelong commitment, and therapists need to make sure a person is ready for that commitment. Not all therapists follow this and I’ve had more than a few girls tell me they started on hormones just to transition back to female because they realized they were wrong. They were just confused, not trans. Had their therapists actually spent time talking to them, they might not have been so rash in their decision to give these people hormones.

#2. People with mental conditions are special cases when it comes to transitioning. Sure, some people with mental disabilities like Bi Polar and ASDs could very well be trans, but this needs to be examined closely and more in depth. It’s true, many with these conditions do not understand the long term effects of transition. Additionally, some of these individuals mimic those around them and may think they are trans because they want to be like a close friend or they think they are because they know someone trans they enjoy being around. I’m not saying this is the case for all, but since it will happen in some cases, therapists should use extra precautions to ensure the individual is trans, has a persistent desire to transition and understands as best they can the consequences of said transition. Also, if they are on medication, it may be pertinent to ensure hormone medications don’t counteract with what medications they are on for mood stabilization, hyper activity, etc.

A lot more is going to go into helping someone with a mental condition transition, so no therapist should just hand over a script and say “Here you go. Have at it, Bucko.”

It is coming out that many transabled people who have the surgery, end up regretting it. I saw that very thing on 48 Hours or 20/20. I can’t remember which. So, they are no better or worse after the surgery.

In every person’s story I’ve read about transabled individuals it seems as if BIID is nothing more than a fetish. Do you get horny every time you inject yourself with T (the injection process - not the results of taking T that is), or when you dress up in male clothes? I sure as heck don’t. To me, being transgendered is just who I am. People who are transabled often get hard-ons by being in their wheelchairs, braces, or wearing diapers. That’s NOT the same thing and any comparison to transgenderism is offensive IMO. While cutting off a limb may get their rocks off, the after effects are showing to be a major let down according to people with BIID who have been interviewed on television.

Finally, if they want to have surgery and disfigure themselves, that’s fine. My issue is with them trying to take services those of us born into our disabilities are having trouble getting because once they become “disabled” they will qualify for state funding and those of us taxpayers will all be paying for them to live as disabled individuals. You pay for your transition, that’s right, but you’ll also be paying for the transabled guy for the rest of his life, if he succeeds at hacking off his leg.

I went into this post expecting to be offended on the behalf of transabled people (I’m not transabled myself). I came out of it offended as a transsexual person (and I AM transsexual).

There are no “rules” for being transsexual. If you identify as a sex other than the one you were assigned at birth, and you agree that the label “transsexual” is appropriate for you, you’re transsexual, and that’s that.

If you mean that there are “rules” for medical transition, I would still disagree. There is a set of guidelines (which I personally think are BS, but that’s another story) but the arbiter of who does and does not access transition services is PRIVILEGE. I’m sure you’re familiar with it, since you’re a trans wheelchair user — well, it’s privilege that has prevented God knows how many gay trans people from transitioning medically, or forced them to lie in order to do so. It’s privilege that means that wealthy white people like me will be able to get the hormones and surgery we need, while poor people of color the world over never will. It’s privilege that allowed YOU to transition, and this whole post is dripping with it.

Brandon Teena’s death was his fault because he went to the wrong town and hung out with the wrong guys? Any other dude who did the same thing wouldn’t have gotten murdered! He was killed because he was transsexual, so unless you’re saying he was stupid for being trans… no, either way you come off as a huge dick.

Since you seem to get off on name-dropping all the PWD you know, I’ll do the same. My ex-boyfriend and still-close-friend is seventeen years old. He has Asperger’s Syndrome, just like your son. He is transsexual. He is under a power play from his therapist, who doesn’t want to write him an endocrinology letter because she feels that his Asperger’s might disqualify him from making his own medical decisions, even once he’s 18 and legally autonomous. The idea is that his Asperger’s prevents him from seeing the long-term consequences of transition. Well, guess what? AS makes my friend socially awkward, but it does not mean that he doesn’t know what he needs. It sickens me that people are trying to disempower him simply due to the AS label. It’s ableism in the first degree.

And I feel just as strongly that your assertion that transabled people are incapable of making their own surgical decisions is ableism. Whether or not BIID can be properly called a mental illness, and I believe that it may well be, it is totally ridiculous to then assume that people with BIID have dysfunctional thinking about their own needs. Certainly, people having psychotic episodes should not be allowed to injure themselves; nor should people with major depression be encouraged to commit suicide. But their thoughts are *delusional*: psychosis is being out of touch with reality, and suicidal thinking usually engenders the delusion that life is not worth living. People with BIID have no *delusions* about their status; they do not *believe* that they are disabled. They do *feel* that they need to become disabled, but I see no reason why such feeling is any less valid than my feeling that I need to transition to male. I have a spiritual belief in every person’s inherent worth and dignity, and if affirming a transabled person’s dignity means taking them seriously and letting them have the surgery they want, so be it.

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

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.

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.

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.

Yours,
Janelle

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.