First, as I understood from what was written above there are no known cases of people with BIID that wanted to have celebral palsy. For me, CP has been a needed disability for years. I want to have spasms and contractions, though I´m fully aware of how uncomfortable and painful they could be.

And second, a part of my need is also to lose my bladder control. This is something I´ve always felt as a part of my BIID. Now, when I´m pretending, I always use diapers to be able to feel that part of the paralyzis fully.

Maybe I´m alone with those needs, but still, I thought you should know that someone could have a desire for CP, and incontinence, as well.

The problem here is not that of seeing “negative”, but one of gauging balance. There are negative aspects and there are positive aspects. And an impairment, in and of itself, is not negative, nor is it positive, it’s neutral.

As for the piece of machinery, well, chances are that if you’d been an amputee, you wouldn’t have been running it in the first place ;) I changed line of work to allow me to wheel full time. Others do to.

For myself the desired leg amputation may be viewed by others with BIID as perhaps a minor issue, with a good deal of independence and mobility still available. If I had been able to achieve an amputation as a young adult, I would have been forced to find a career alternative, been dependent on family for a longer time and I would not have the current lifestyle that I now enjoy. Most distasteful to me is the prospect of having to be reliant to some degree on government services and needing to live in an urban area where sevices and infrastructure would be availabe. Minor to some, I am sure but a major issue for me, and this is not even touching on injury to the upper body, spine and pelvis caused by long term crutch use. Using a prosthesis in my view would be totally pointless and a contradictory conclusion to the whole process.

I was running a piece of machinery in a remote location a few months ago, due to a mechanincal failure it went completely haywire. I was able to get to it in time to shut it off before any real damage occured. Had my response been delayed, could have been a total loss of everything. Bit of a reality check for me.

My concern is that transabled people seek the experiences of people with disabilities that are socially sanctioned and often idealized, such as SCI/paraplegia - society conceals the messier issues

Your fear is, transabled people are cherry picking, see only the sides they want to see. I can tell from my own experience, this fear has no basis.

I do not call myself transabled or BIID “sufferer”, because I AM disabled. Physically disabled due to a rare syndrome as I say so often.

No, it is not a SCI, it is something different. I do have pain, I have problems to sit comfortably. Pain does not make me horny. BUT, it is part of who I am. All the hassle and discomfort, it is part of who I am and who I have ever been. You just adjust the body to the identity that has always been there. So a transabled person does not deny all the messier issues as you call it. Because these issues also have always been part of the identity a transabled person has, there just was some kind of “delay” until these messier issues appeared in life, so to say. So, when I have pain or can’t sit comfortably, sometimes I do smile, because I know who I am and that it is part of me. I do not like pain, just as noone else does. But I know who I am and what is part of who I am. And this is what is also part of me, the messier stuff.

Botox in the nerve trunk would likely kill you. Phenol or ethyl alcohol wouldn’t, but you need to do a LOT of research. Botox is indicated in the musles themselves, and the amount required to paralyse enough of the muscle groups would be toxic

Did my post answer your questions to your satisfaction? Does it makes sense? Has it raised other questions or comments?

Anyways, about the pain/complications thing. Personally, it all comes down to whether the physical pain or complications are “worth it.” By that, I mean whether I am willing to accept the physical problems in an attempt to rid myself of the emotional pain.

I keep going back to this, because I’m aware that bladder dysfunction, skin breakdown, etc. are complications to be reckoned with. The answer to this is always a resounding YES. YES, I’m willing to deal with skin breakdown if it happens. YES, I’m willing to deal with the loss of bladder and bowel control. YES, I’m willing to deal with any pain issues that may arise. YES, I’m willing to deal with spasticity, spasms, etc. Yes, yes, yes, yes, YES. Because even with all that stuff, it still tops the emotional pain and anguish that seems to get worse every day.

As for the facilities and resources… Like many others here, I’ve done some wheeling for therapeutic purposes. There have been instances where I’ve been “unable” to use a certain facility, but usually, it’s by someone who is not using a wheelchair or anything that would “bound” them to use the facility. I’ve done some wheeling trips around the Vancouver area and in Victoria, and like Sean, I see people without wheelchairs or mobility impairments using up things like accessible washrooms and such. Theoretically, I *could* walk up and use a stall, but then we’d run the risk of making people like you, who really cannot do the same thing, look bad. I’m basically repeating Sean here, but I think it’s really important that what we do don’t affect the disability community in a negative manner.

Enough of my own ranting as well… Jocelyn, if you want to discuss this further, I check back often at the Wheelchair Zone forums, so you may message me there.

As I was reading Jocelyn’s questions, my own answers sprang to mind. Unfortunately, Sean pretty much repeated everything I had to say on the subject!

One thing I’d point out is that:

Are there transabled people who experience or emulate disabilities which are less socially excluded, such as cerebal palsy that impairs speech? epilepsy? brain injury?

Having had very close contact with all of these disabilities you mention, I would argue very strongly they they are NOT less socially excluded.

Also I believe that there’s a reason why we don’t hear of wannabes of this condition. I don’t know how much you’ve read of the old posts but I mention fairly frequently the research done by V.S. Ramachandran. He has found strong evidence that BIID is a neurological disturbance caused by a problem with the brain’s ability to process body image. The brain has a kind of a map of each area of the body, and this could very well be what is causing the problem. Whether you desire paralysis, amputation, blindness or deafness, it all has to do with “erasing” if you will, an area of the body from the body image map.

Disabilities such as epilepsy, brain damage or CP aren’t relevent to the body image map, because they relate to damage to other areas of the brain, and not to a part of the body found on the body image map. And so, if Ramachandran’s hypothesis proves true, that could explain why we don’t hear of wannabes of these conditions.

As for resources such as toilets and parking: BIID is a real mental condition and it’s not less valid or less worthy of treatment than any other condition. People using wheelchairs for therapy are not the problem; they deserve therapy as much as anyone else does. The problem is people who have NOTHING wrong with them are using these resources. That is, indeed, a problem. But it’s not something that’s related to a transabled person using them, that’s not our fault. I know Sean basically said this but it bears repeating.

Thanks for posting Jocelyn’s letter, it is extremely thoughtful of her and it is always nice to see open minds from the real paraplegics out there. She raises interesting questions that you have brought up at other times and that bug or intrigue me. There are things about SCI, other than use of a wheelchair, that I guess I do embrace. However, some aspects, pressure sores, UTIs, premature arthritis,…, aren’t so easy to embrace. These are some of the things that make being transabled so tough–we need to become something else but that something can carry a huge price.

Perhaps Jocelyn or some of the other paraplegics who read your blog(s?) might like to write something on their perspective of people with BIID.

John

Especially early on, there seemed to be the opinion among some women that we were lucky - we got to be women, without the downsides like PMS, menses, PCOS, high cancer risks for certain types of cancer, risk of accidental pregnancy, etc. They just assumed we liked it this way.

Some of this is outright incorrect - sure, we can’t get ovarian cancer, but our risk of breast cancer is much higher than it would have been - possibly even higher than theirs, due to taking hormones. Have more risks in other areas, and still have risks that men do, such as prostate cancer.

We don’t like it this way. Maybe some do, but not us. Were we offered all the downsides, no guarantees that we wouldn’t have cysts, cancer, be impotent or something else, we’d take it. If we were offered a pill, and wake up the nest with normal female anatomy, we’d take it. Even if that meant we woke up with terrible cramps, found we were infertile, and had ovarian cancer … we’d take it. If told beforehand that we /would/ have everything go wrong … maybe we’d pass, maybe not. But were we told that there was a 1% chance things would be perfect, normal, functional. Yeah, we’d go for it. Because it’s possible.

Yes, we are real women, but we still know that our body still carries scars from out past. It doesn’t make us less women, but it does gnaw at us, because it’s still part of who we are.