Comments on: Tough question and medical bias http://transabled.org/thoughts/tough-question-and-medical-bias.htm Talking about Body Integrity Identity Disorder - Just another disability! Fri, 21 Nov 2008 08:52:43 +0000 http://wordpress.org/?v=2.7-beta2 hourly 1 By: Bracer http://transabled.org/thoughts/tough-question-and-medical-bias.htm/comment-page-1#comment-4441 Bracer Sun, 20 May 2007 10:43:27 +0000 http://transabled.org/thoughts/tough-question-and-medical-bias.htm#comment-4441 As a disabled person myself, I think that society and the medical profession assume, as they are afraid of disability themselves, that we have bad lives. I know that MOST people think that I am brave because I am upbeat and clearly not fussed about having to wear leg braces and use a wheelchair. I have so often been told that they think I am awesome because I do not seem to let it get me down. On occasion, when I have bothered to linger, and ask why they might think so, it becomes clear that the majority of people think it impossible to live as a crip. They only see the nasty and negative. I have had hearing loss over a 10 year period and the audiologist that had the job to tell me, three years ago, that I needed 2 hearing aids, told me so with the face of a funeral director. She expected me to burst out in tears and slash my wrists? When I choose two electric blue hearing aids she felt she had to warn me that it will attract attention. As if so called Caucasian flesh pink does not. The attempt to hide trappings of cripdom, shouts to the world that it is a verboten subject. Quite the opposite is true.... With the obvious bright blue BTE's, nobody has treated me with anything than normal respect. Nobody pretends it is not there.... yet nobody seems uncomfortable because they surely feel from my attitude that I am not hung up In fact, now that I have climbed off the conveyor belt of rushed life, I do seem to have a far better quality of life. As my Chinese Medicine Dr says: You have to hear your own footsteps and the sound of your own breath every day. I am happy to say that on most days I can do so. As a disabled person myself, I think that society and the medical profession assume, as they are afraid of disability themselves, that we have bad lives. I know that MOST people think that I am brave because I am upbeat and clearly not fussed about having to wear leg braces and use a wheelchair.

I have so often been told that they think I am awesome because I do not seem to let it get me down. On occasion, when I have bothered to linger, and ask why they might think so, it becomes clear that the majority of people think it impossible to live as a crip. They only see the nasty and negative.

I have had hearing loss over a 10 year period and the audiologist that had the job to tell me, three years ago, that I needed 2 hearing aids, told me so with the face of a funeral director. She expected me to burst out in tears and slash my wrists? When I choose two electric blue hearing aids she felt she had to warn me that it will attract attention. As if so called Caucasian flesh pink does not. The attempt to hide trappings of cripdom, shouts to the world that it is a verboten subject. Quite the opposite is true…. With the obvious bright blue BTE’s, nobody has treated me with anything than normal respect. Nobody pretends it is not there…. yet nobody seems uncomfortable because they surely feel from my attitude that I am not hung up

In fact, now that I have climbed off the conveyor belt of rushed life, I do seem to have a far better quality of life. As my Chinese Medicine Dr says: You have to hear your own footsteps and the sound of your own breath every day. I am happy to say that on most days I can do so.

]]> By: Brice http://transabled.org/thoughts/tough-question-and-medical-bias.htm/comment-page-1#comment-3406 Brice Mon, 09 Apr 2007 15:17:36 +0000 http://transabled.org/thoughts/tough-question-and-medical-bias.htm#comment-3406 Thanks Sean for bringing such clarity of thought to a vexed question. Thanks Sean for bringing such clarity of thought to a vexed question.

]]> By: Marie http://transabled.org/thoughts/tough-question-and-medical-bias.htm/comment-page-1#comment-3405 Marie Mon, 09 Apr 2007 08:28:00 +0000 http://transabled.org/thoughts/tough-question-and-medical-bias.htm#comment-3405 Personally: It's hard to ignore the benefits of being a hearing person however it'd also be nice not to feel like crap whenever I hear bad noise[1]. Depending on the day someone asks me I'd take a cure on the condition that I remember nothing of being transabled (and my hearing be less sensitive to sounds) or I say "No way, make me deaf!" I want to want to be hearing. 1: http://makemedeaf.blogspot.com/2007/04/good-noise-bad-noise.html - this explains "bad noise" Personally:

It’s hard to ignore the benefits of being a hearing person however it’d also be nice not to feel like crap whenever I hear bad noise[1]. Depending on the day someone asks me I’d take a cure on the condition that I remember nothing of being transabled (and my hearing be less sensitive to sounds) or I say “No way, make me deaf!” I want to want to be hearing.

1: http://makemedeaf.blogspot.com/2007/04/good-noise-bad-noise.html - this explains “bad noise”

]]> By: John http://transabled.org/thoughts/tough-question-and-medical-bias.htm/comment-page-1#comment-3403 John Mon, 09 Apr 2007 06:34:55 +0000 http://transabled.org/thoughts/tough-question-and-medical-bias.htm#comment-3403 It is very hard for me to imagine what a "cure" would be like. This is because a component of our being transabled must be learned or picked up from the environment. What I mean is that while this compulsion with me ever since childhood and I may have been born with it, some aspects must have been picked up from the environment. Think about it this way, would paraplegia be our outlet if there were no paraplegics because spinal cord injuries, as before the 1940s, were almost always fatal? Perhaps one might desire to become a polio paraplegic or something similar. What I am driving at is that this doesn't seem to be just an emotional state that might be treatable as depression can be with antidepressants but, as with much depression or other mental problems, we have also learned aspects that have become ingrained into our persona. Treating the ingrained learned components, by means other than surgically fulfilling my need to be a para, is likely to be very difficult. Still, you never know what the future will bring except that it doesn't look like much is on the horizon! Sean, your reading material on medical bias looks very familiar--we have similar tastes when it comes to going to the library. From some of the reading that I have done, many--but certainly not all--persons with spinal cord injuries also report sexual satisfaction to a degree that might seem to conflict with established views of what they are "capable of". All of these studies do seem to demonstrate that the human mind is quite flexible when it comes to satisfaction with quality of life. And, unfortunately, the studies that you cite also show that the physicians who could safely make us paraplegics, amputees, etc. might have a very hard time seeing things our way anytime soon. It is very hard for me to imagine what a “cure” would be like. This is because a component of our being transabled must be learned or picked up from the environment. What I mean is that while this compulsion with me ever since childhood and I may have been born with it, some aspects must have been picked up from the environment. Think about it this way, would paraplegia be our outlet if there were no paraplegics because spinal cord injuries, as before the 1940s, were almost always fatal? Perhaps one might desire to become a polio paraplegic or something similar. What I am driving at is that this doesn’t seem to be just an emotional state that might be treatable as depression can be with antidepressants but, as with much depression or other mental problems, we have also learned aspects that have become ingrained into our persona. Treating the ingrained learned components, by means other than surgically fulfilling my need to be a para, is likely to be very difficult. Still, you never know what the future will bring except that it doesn’t look like much is on the horizon!

Sean, your reading material on medical bias looks very familiar–we have similar tastes when it comes to going to the library. From some of the reading that I have done, many–but certainly not all–persons with spinal cord injuries also report sexual satisfaction to a degree that might seem to conflict with established views of what they are “capable of”. All of these studies do seem to demonstrate that the human mind is quite flexible when it comes to satisfaction with quality of life.
And, unfortunately, the studies that you cite also show that the physicians who could safely make us paraplegics, amputees, etc. might have a very hard time seeing things our way anytime soon.

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