transabled.org

This is a sad story deglorifying the para issue. I like it because I think it is realistic. Maybe we are driven by our desires being a para but never forget the seriousness of an SCI.

Thank you Sandy, I’m glad you appreciate the story, and grasped the idea behind it. :)

This really got to me… I’ve been thinking a lot about cliffs recently. I feel compelled to stand on the edge of cliffs. No, I’m not going to jump. I just contemplate.

SCIs are indeed serious business. I will have a lot of grief. I am very scared. I am not deterred.

Thank you for the story.

I realize this comment comes a long time after this was written – I hope you’ll accept my very belated response.

I have to congratulate you for this mental exploration of another aspect of the wannabe/pretender/transabled phenomenon. This is a viewpoint that has been troublingly absent from the discussion of transability and as a lifetime paraplegic I’m heartened to read this sort of “thought experiment” that contemplates what it might be like if people who desire disability were able to attain it. I can assure you, it’s one of those things that you would never want once you had it.

However – I do have a real concern regarding the depiction of rehab that this story describes. One of the things that I have noticed about the transabled discussion is that the care-receiving and attention-receiving aspects of aquiring and living with a disability are romanticized if not downright unrealistic, and this story is a great example of that. I have attended inpatient rehab recently as well as outpatient rehab as a child, and I can tell you it’s not much like this story describes. Yes – there is pain. Yes, there are indignities and a lack of privacy which are often the biggest contributors to the sense of humiliation that can underly the rehab experience.

However – it’s important to know about medical and physical rehabilitation.
During the medical recovery phase, you spend anywhere from three weeks to three months in the hospital depending on the severity of the accident and any surgery that might be required. It is VERY unusual that patients be kept in the same position for extended periods of time (regardless of the use of a Stryker bed to change their orientation in bed) because of the very real risk of blood clots and pressure sores. Even difficult orthopedic recoveries (For example, a broken pelvis, multiple broken bones or spinal transection) are only a few weeks and involve graduated periods of mobilization. It’s very common now that people who sustain a spinal cord injury receive surgery to fix their vertebrae to allow them to get mobile as soon as possible – it’s no longer common for SCI patients to be in halo traction for several weeks. Often the medical phase is easier because the nursing staff take care of all of the things that you aren’t able to do yourself – like toileting, bathing, etc, except that most people I know say that they were so ill in the medical recovery of their injury that they don’t really remember much of it. Medical staff do their best to avoid making pronouncements on your recovery as they know that much can change in rehab and the 2 years after an injury.

The physical rehab phase is anywhere from 5 weeks to six months – some people who sustain high level SCI’s and are quads may need more time in rehab. From the moment you get to rehab, you are moved toward independence. You are given a schedule of physical, occupational and other types of therapy to follow and expected to navigate that with minimal help after only a few weeks. Rehab is hard work, and doesn’t involve a whole lot of “caregiving” by staff in the classic sense that you might associate with being in a regular hospital. Extended visits and calls are discouraged if they get in the way of your therapy.

Reactions like those you envision from friends and family are rare – though they do sometimes happen. Paraplegia is increasingly being viewed not as the end of a life, but the beginning of a different type of life (perhaps the way coming out of the closet might be viewed). While every person who goes through a life-altering accident like this (especially those that are the result of self-harm as this depicts) emotionally adjust in different ways, the impression I’m left with after reading this vignette is that you have a lot of “romantic” notions of how people go through serious illness, in a way that tells me that perhaps what you look for in desiring paraplegia is the sense of physical and emotional attention from doctors and caregivers and a reason for friends and family to be with you and pay attention to you.

It used to really bother me that there were people in the world who so desired a serious medical and physical condition like paraplegia so badly that they would pretend the more obvious aspects of it or live it to the extent that they could. Now, I find it really intriguing, but in a way, saddens me because of these repeating themes of seeking the attention, caregiving and sympathy of their family, friends, doctors and general public. If there’s anything I can tell you about living with and acquiring a physical disability, it’s that life goes on, and paraplegia or disability doesn’t stop that. If something troubles you before, it will continue to trouble you the same or worse later on.

In any case, I hope you’ll take my perspective in the spirit in which it was offered, and accept my congratulations on exploring this aspect of the transabled desire, by following it through mentally to how it might feel if transabled feelings resulted in actually acquiring a disability. One of the questions I am asked most often is whether I enjoy being disabled or using a wheelchair. The only way I can answer is to say that I enjoy my life just like most people do… but though I rarely think about them anymore, the restrictions paraplegia can put on my life are difficult and don’t get easier as you get older. I hope for people who deal with ongoing feelings of needing to have a disability that you are able to address the roots of these feelings and find treatment… because even false restrictions on yourself to pretend a disability you don’t have fall very short of a whole, happy life, and acquiring that disability won’t make the core issues you have that caused the desires/needs for that disability to disappear. To put it coarsely, if you are screwed up for whatever reason before a disability, you will be both disabled and screwed up afterwards as well.

I have to congratulate you for this mental exploration of another aspect of the wannabe/pretender/transabled phenomenon. This is a viewpoint that has been troublingly absent from the discussion of transability

Thank you. This is something that has long been bugging me as well, and I try to think through most aspects. I think these are important things to discuss, and I get annoyed at the number of transabled folks who don’t take the time to get out of what I call “fantasy-land”.

One of the things that I have noticed about the transabled discussion is that the care-receiving and attention-receiving aspects of aquiring and living with a disability are romanticized if not downright unrealistic

First, I ought to mention that I wrote that quite a long time ago. There certainly is a good dose of naivety. I have learned a lot about rehab/etc in the 15 or so years since I wrote that bit.

It is true that these aspects of acquiring a disability are often romanticised and often unrealistic by transabled folks. But then, we have to accept that there have not been a whole lot of portrayals of rehab available for people to read/see. There have been some films (Born on 4th of July, Waterdance, and a few others). Some books I guess, and perhaps nowadays blogs can be found more easily. But it is hard to form an accurate view of something when there are not many “snapshots” of that thing.

Reactions like those you envision from friends and family are rare – though they do sometimes happen.

From talking with dozens of paras and other people with disabilities, family and friends reactions like that are not so rare. How many parents of deaf kids don’t actually know how to sign? How many family members of people with CP don’t have accessible housing, including their parents? These things are unfortunately not that rare.

It used to really bother me that there were people in the world who so desired a serious medical and physical condition like paraplegia so badly that they would pretend the more obvious aspects of it or live it to the extent that they could. Now, I find it really intriguing

Thank you. I am glad you were able to change your perception on this. I know it bothers a lot of people with disabilities – and I assure you we don’t do it “on purpose”. I am convinced that both “communities” would benefit from more discussion with one another. Transabled folks would benefit by being able to get a better understanding of life with a disability – including de-romanticising rehab, etc. The disability community would gain greater understanding of what we go through.

saddens me because of these repeating themes of seeking the attention, caregiving and sympathy of their family, friends, doctors and general public. If there’s anything I can tell you about living with and acquiring a physical disability, it’s that life goes on, and paraplegia or disability doesn’t stop that. If something troubles you before, it will continue to trouble you the same or worse later on.

Actually, I think you’ll find most transabled people aren’t seeking the attention of anyone. This is a misconception that is common. We aren’t “in it” for attention. This is really not about how others perceive us – it is about how we are, how we see ourselves. It is an easy mistake to make, and one I’ll admit to have done myself about myself. I thought at one point the need for attention might be one of the triggers or cause for BIID. It was quickly evident that was not the case.

I hope you’ll take my perspective in the spirit in which it was offered

Yes, thank you. I always welcome open minded discussions. We may not always have the same point of view – but that’s not a problem, as long as we’re both willing to listen and give due consideration to the other’s point of view. I’ve changed my perspective & thinking as a result of such discussion often enough :)

To put it coarsely, if you are screwed up for whatever reason before a disability, you will be both disabled and screwed up afterwards as well.

True enough. I said before that I didn’t think surgery was an option because it would not make the feelings disappear. Yet, of all those who have finally aquired their desired body, none regret a thing and all report a significant improvement in their lives. They may still have BIID, but it doesn’t hurt them the way it did before they acquired a physical impairment. For myself, I suspect I would still be dealing with depression, but I am also convinced that my unresolved need to be paraplegic has a severe impact on the level and acuteness of my depression.

@Josie and Sean: To me this is one of the best of all the posts on this site. Personally, it is definitely in the “Don’t Miss” category.

Although I used to have disability fantasies a long time ago, it is now all about the realities. Josie, I greatly value people with disabilities coming here to give us a reality check, and it is certainly more impactful when done with the sensitivity to our feelings that you showed. I am also fortunate to have friends with paraplegia, or related conditions, who spare me no details of the less pleasant realities of their situation.

There is not much I can add to Sean’s commentary. I am in agreement with the points he has made. I would reemphasise that BIID is not about getting attention. If anything I have the impression that we are a bit of a shy bunch. This is very reasonable given our usual histories of hiding this dark secret for most of our lives.

I will add one thing about surgery though, since I have some experience here. Yes, I have awareness that I am still a hermaphrodite after genital surgery, despite my genitalia now appearing typically female. However, the emotional pain of being a hermaphrodite, which I experienced prior to surgery, is now gone. I find no reason to expect things to be different with regard to BIID.

Looking back at the original post three years after first reading, I realise that some things have changed for me, in a very positive way, which would obviate some of the difficulties described. Firstly I have done a huge amount of psychological work in those three years. I am now fortunate to be currently free of depression. Much emotional baggage from my past has been dealt with and discarded. Josie, the core issues which cause BIID do not appear to be psychological in nature, and are therefore not amenable to such an approach. It appears likely that the cause is a congenital anomaly in the anatomy or physiology of the brain.

The other change is that I am now almost completely out of the closet. Virtually all of my friends and family know about my BIID, and I refer to it openly on facebook. Those fears are gone. There will not be any loneliness pre or post ability reassignment surgery.

It was an eye opener for me to read what I said about cliffs three years ago, because I spent the following ski season skiing off cliffs with intent to self harm. This impulse has gone, primarily on account of using a wheelchair most of the time.