Comments on: To wheel, or not to wheel? http://transabled.org/thoughts/to-wheel-or-not-to-wheel.htm Talking about Body Integrity Identity Disorder - Just another disability! Fri, 22 Aug 2008 04:04:46 +0000 http://wordpress.org/?v=2.5.1 By: Ronald http://transabled.org/thoughts/to-wheel-or-not-to-wheel.htm#comment-6125 Ronald Wed, 05 Sep 2007 03:13:47 +0000 http://transabled.org/thoughts/to-wheel-or-not-to-wheel.htm#comment-6125 It is hard to give an unbiased opinion here, but I will try. The difference is the wheelchair users among us can quite easily blend in without anybody raising an eyebrow or questioning the need for the wheelchair. It is a pretender's dream! There are no doubt a multitude of reasons that one may need a wheelchair, none of which need to be visually obvious. Those of us who wish to loose a limb have a hard time making our public appearance convincing, or explaining why we are on crutches then off and having no obvious problem with our gait. Claire, what I have read in this post is your fear, and a very genuine one of being 'outed'. You have mentioned living in a small community, etc. where everyone knows everyone elses' business. May I suggest gently integrating your wheelchair into your daily routine by first starting out with your weekly attendance at school. Where and when the line is drawn is your decision and yours only. I am sure you can keep a good cover story. I think you have a great opportunity at the very least integrate wheelchair use into your normal routine. The big issue I believe is with your spouse, which is up to you and only you as to how to handle this. As for the townfolk, you have seen a doctor outside the community, your condition would not be discussed behind your back. Ultimately, we must make our own decisions. Those of us who wish we could appear as our handicapped selves in public salivate over your predicament with envy! We say go for it!-but our advice is biased. It is hard to give an unbiased opinion here, but I will try. The difference is the wheelchair users among us can quite easily blend in without anybody raising an eyebrow or questioning the need for the wheelchair. It is a pretender’s dream! There are no doubt a multitude of reasons that one may need a wheelchair, none of which need to be visually obvious. Those of us who wish to loose a limb have a hard time making our public appearance convincing, or explaining why we are on crutches then off and having no obvious problem with our gait.

Claire, what I have read in this post is your fear, and a very genuine one of being ‘outed’. You have mentioned living in a small community, etc. where everyone knows everyone elses’ business. May I suggest gently integrating your wheelchair into your daily routine by first starting out with your weekly attendance at school. Where and when the line is drawn is your decision and yours only. I am sure you can keep a good cover story.

I think you have a great opportunity at the very least integrate wheelchair use into your normal routine. The big issue I believe is with your spouse, which is up to you and only you as to how to handle this. As for the townfolk, you have seen a doctor outside the community, your condition would not be discussed behind your back.

Ultimately, we must make our own decisions. Those of us who wish we could appear as our handicapped selves in public salivate over your predicament with envy! We say go for it!-but our advice is biased.

]]> By: Brice http://transabled.org/thoughts/to-wheel-or-not-to-wheel.htm#comment-5707 Brice Thu, 23 Aug 2007 11:42:56 +0000 http://transabled.org/thoughts/to-wheel-or-not-to-wheel.htm#comment-5707 Hi Claire, I've been out of touch with the site for some time. I say, Go for it! There was a time in my life when I had the freedom to hang out as a crutches-and-braces user in a couple of different settings, repeatedly, for several days at a time. I would use a wheelchair when out of the braces. Only the fellow BIID I was visiting knew I could walk unaided, and I made it my business to arrive and depart in crip mode so even they have never actually seen me walk. I got to know people in those settings who often would be quite curious when we first met but once I explained "I have a congenital condition that limits the use of my legs" everything would settle down. On the rare occasions when someone would push the question I would firmly change the subject. It is, after all, rude to be overly curious about disability. Unfortunately my life situation changed and I lost those opportunities to be mobile in the way I am meant to be. Also, after years of daily crutch use at home a shoulder has given out and I would be limited to wheelchair use if I could get back to living on one floor and going out safely, nothing unusual for crips my age. I think one motto we need to keep before us is "I am not my disability", i.e. we need to be the person we are, who happens to have a mobility impairment. This is hard at first because the frustration at not being permitted (by ourselves and/or by circumstance) to live the physical expression of our disability causes us to put more focus on it than we should, and more than others will. My experience has been that once settled into cripness, it becomes just another element of who I am, admittedly an unusual one but by no means unique. One caution, you need to get your upper body in shape for all-day every-day wheeling. Once again let me say, Go for it! Hi Claire, I’ve been out of touch with the site for some time. I say, Go for it! There was a time in my life when I had the freedom to hang out as a crutches-and-braces user in a couple of different settings, repeatedly, for several days at a time. I would use a wheelchair when out of the braces. Only the fellow BIID I was visiting knew I could walk unaided, and I made it my business to arrive and depart in crip mode so even they have never actually seen me walk. I got to know people in those settings who often would be quite curious when we first met but once I explained “I have a congenital condition that limits the use of my legs” everything would settle down. On the rare occasions when someone would push the question I would firmly change the subject. It is, after all, rude to be overly curious about disability.
Unfortunately my life situation changed and I lost those opportunities to be mobile in the way I am meant to be. Also, after years of daily crutch use at home a shoulder has given out and I would be limited to wheelchair use if I could get back to living on one floor and going out safely, nothing unusual for crips my age.
I think one motto we need to keep before us is “I am not my disability”, i.e. we need to be the person we are, who happens to have a mobility impairment. This is hard at first because the frustration at not being permitted (by ourselves and/or by circumstance) to live the physical expression of our disability causes us to put more focus on it than we should, and more than others will. My experience has been that once settled into cripness, it becomes just another element of who I am, admittedly an unusual one but by no means unique.
One caution, you need to get your upper body in shape for all-day every-day wheeling.
Once again let me say, Go for it!

]]> By: Claire http://transabled.org/thoughts/to-wheel-or-not-to-wheel.htm#comment-5516 Claire Tue, 14 Aug 2007 01:58:08 +0000 http://transabled.org/thoughts/to-wheel-or-not-to-wheel.htm#comment-5516 Thanks everyone for your comments and support. I will definitely keep you posted. :o) @curious: Well honestly, we don't talk much about it. I have told him, and he was ok with it. He's not thrilled by any means, but I think he sees now that it doesn't hurt anyone. We have an agreement that I do what I need to do and he knows now...and has admitted to me in one of our rare conversations about it...that it's not the end of the world and that if his wife was going to be mentally ill things could be much worse than BIID. We are working on relationship issues and I think as those get resolved we will be better able to discuss BIID openly between us. Thanks everyone for your comments and support. I will definitely keep you posted. :o)

@curious: Well honestly, we don’t talk much about it. I have told him, and he was ok with it. He’s not thrilled by any means, but I think he sees now that it doesn’t hurt anyone. We have an agreement that I do what I need to do and he knows now…and has admitted to me in one of our rare conversations about it…that it’s not the end of the world and that if his wife was going to be mentally ill things could be much worse than BIID. We are working on relationship issues and I think as those get resolved we will be better able to discuss BIID openly between us.

]]> By: curious http://transabled.org/thoughts/to-wheel-or-not-to-wheel.htm#comment-5513 curious Mon, 13 Aug 2007 21:30:57 +0000 http://transabled.org/thoughts/to-wheel-or-not-to-wheel.htm#comment-5513 Interesting idea, I'd say go for it. However, I'm curious... it sounded from your past accounts like your husband wasn't crazy about the wheeling and the trips, how does he feel about this idea? Interesting idea, I’d say go for it. However, I’m curious… it sounded from your past accounts like your husband wasn’t crazy about the wheeling and the trips, how does he feel about this idea?

]]> By: auwheeler http://transabled.org/thoughts/to-wheel-or-not-to-wheel.htm#comment-5502 auwheeler Mon, 13 Aug 2007 08:19:50 +0000 http://transabled.org/thoughts/to-wheel-or-not-to-wheel.htm#comment-5502 i would definately go for it Claire...what have you to loose really....as for getting found out...so what ..just have your story right to cover Good luck and happy wheeling i would definately go for it Claire…what have you to loose really….as for getting found out…so what ..just have your story right to cover Good luck and happy wheeling

]]> By: Rorschach http://transabled.org/thoughts/to-wheel-or-not-to-wheel.htm#comment-5500 Rorschach Mon, 13 Aug 2007 02:07:49 +0000 http://transabled.org/thoughts/to-wheel-or-not-to-wheel.htm#comment-5500 You might as well see what it is like. You haven't wheeled full time yet and it would be a great opportunity for you to better get to know yourself in the BIID sense. Try looking at it from a future where you did not wheel. How would you feel always wondering what it would have been like to wheel full time? You might as well see what it is like. You haven’t wheeled full time yet and it would be a great opportunity for you to better get to know yourself in the BIID sense.

Try looking at it from a future where you did not wheel. How would you feel always wondering what it would have been like to wheel full time?

]]> By: Sophie http://transabled.org/thoughts/to-wheel-or-not-to-wheel.htm#comment-5499 Sophie Mon, 13 Aug 2007 01:28:55 +0000 http://transabled.org/thoughts/to-wheel-or-not-to-wheel.htm#comment-5499 I definately say wheel. People tend to be accepting of explanations given to them, they often don't want to force the issue. I definately say wheel. People tend to be accepting of explanations given to them, they often don’t want to force the issue.

]]> By: Sean http://transabled.org/thoughts/to-wheel-or-not-to-wheel.htm#comment-5492 Sean Sun, 12 Aug 2007 20:34:01 +0000 http://transabled.org/thoughts/to-wheel-or-not-to-wheel.htm#comment-5492 Well, you already know my opinion: wheel ;) That said, one aspect to consider, in favour of wheeling. If you feel that much better about yourself in the chair, chances are you'll have an easier time learning in school :) Well, you already know my opinion: wheel ;) That said, one aspect to consider, in favour of wheeling. If you feel that much better about yourself in the chair, chances are you’ll have an easier time learning in school :)

]]> By: Marie http://transabled.org/thoughts/to-wheel-or-not-to-wheel.htm#comment-5491 Marie Sun, 12 Aug 2007 18:25:06 +0000 http://transabled.org/thoughts/to-wheel-or-not-to-wheel.htm#comment-5491 <em>I guess it will come down to which is stronger; the fear of exposure and being thought of as weird in some way, or the desire to wheel with the peace and wellbeing that comes with it.</em> Don't forget: most people think people who use wheelchairs are weird--or at least abnormal--anyways. I'd think it through, consider the risks and the chances someone would find out, toss it out the window and wheel. Good luck. I guess it will come down to which is stronger; the fear of exposure and being thought of as weird in some way, or the desire to wheel with the peace and wellbeing that comes with it.

Don’t forget: most people think people who use wheelchairs are weird–or at least abnormal–anyways.

I’d think it through, consider the risks and the chances someone would find out, toss it out the window and wheel. Good luck.

]]> By: jen http://transabled.org/thoughts/to-wheel-or-not-to-wheel.htm#comment-5489 jen Sun, 12 Aug 2007 17:50:03 +0000 http://transabled.org/thoughts/to-wheel-or-not-to-wheel.htm#comment-5489 Take this opportunity now. If you decide not to continue with it, you can always go with the 'good days, bad days' story. Take this opportunity now. If you decide not to continue with it, you can always go with the ‘good days, bad days’ story.

]]> By: Stumpy http://transabled.org/thoughts/to-wheel-or-not-to-wheel.htm#comment-5488 Stumpy Sun, 12 Aug 2007 16:38:33 +0000 http://transabled.org/thoughts/to-wheel-or-not-to-wheel.htm#comment-5488 I'd say DO IT! I'd kill to have that oppertunity. I'm well on my way to becoming a full time AFO wearer. I've been wearing it for a week now and I'm already much happier. I’d say DO IT! I’d kill to have that oppertunity.
I’m well on my way to becoming a full time AFO wearer. I’ve been wearing it for a week now and I’m already much happier.

]]> By: inVivo http://transabled.org/thoughts/to-wheel-or-not-to-wheel.htm#comment-5486 inVivo Sun, 12 Aug 2007 14:49:10 +0000 http://transabled.org/thoughts/to-wheel-or-not-to-wheel.htm#comment-5486 Hi Claire, wheel, DO wheel. People really do not worry about another person in a wheelchair. Its very special to you, to wheel, but the people around you see it just as another wheeler. And why not use those impairments as reason? If the question arises. Good luck! Hi Claire,

wheel, DO wheel.
People really do not worry about another person in a wheelchair. Its very special to you, to wheel, but the people around you see it just as another wheeler. And why not use those impairments as reason? If the question arises.

Good luck!

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