Author Topic: Secret Lives - Paralysis  (Read 5844 times)

Sofie

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Secret Lives - Paralysis
« on: 18 May 2012 10:20PM »
On National Geographic (Nat Geo) at 11pm, they have a show called Secret Lives. This week, it's about a woman who wants to be paralysed. Next week, (it's also on Thursdays at 9pm, I think) it's about a man with Tourettes.

Sunshine Meadows

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Re: Secret Lives - Paralysis
« Reply #1 on: 18 May 2012 10:35PM »
Sofie,

It turns out the program will be more interesting than we both might have though.

I Googled and found more information in the slide show National Geographic put up. It turns out to be part of the Taboo series and the shocking part is the woman can walk.

There are two pictures one whith the woman in a wheelchair,

http://channel.nationalgeographic.com/channel/taboo/secret-lives-pictures/#/taboo-secret-lives-biid-woman-in-chair_46113_600x450.jpg

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Chairbound by Choice

Photograph by Jen Longhurst / Beyond Productions

Chloe Jennings-White leads a double life. A Ph.D chemist in Salt Lake City, Utah, Chloe lives as a paraplegic in a wheelchair. For the most part, people believe that Chloe is unable to walk, but she has a shocking secret. Chloe isn’t paraplegic at all.

and the other with her standing next to the chair,

http://channel.nationalgeographic.com/channel/taboo/secret-lives-pictures/#/taboo-secret-lives-biid-woman-standing_46114_600x450.jpg

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She Can Walk

Photograph by Jen Longhurst / Beyond Productions

Chloe Jennings-White stands beside her wheelchair. She is not a paraplegic, but chooses to live as one

Gravity

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Re: Secret Lives - Paralysis
« Reply #2 on: 18 May 2012 11:48PM »
So here it is.

I ask that people reserve their judgments of Chloe Jennings-White until they read this.
Chloe does not tell people she is paralysed. She used to avoid answering the question and let people assume she had suffered injuries in a car accident but she now has disclosed to everyone that she has Body Integrity Identity Disorder (BIID).
BIID is little understood but all the research that has been done points to it having a neurological basis. The body map in the brain does not equate to the body of the individual, meaning the person does not relate to that part of their body properly. For Chloe, not being paraplegic causes distress. Actions taken that enhance that she is not paraplegic make her feel worse. She uses a wheelchair to manage her BIID symptoms, not to completely simulate paraplegia.
Using the wheelchair and leg braces is beneficial to Chloe on many levels. She does have an SCI which affects function in her left thigh. She has fibromyalgia and she has BIID. Using the wheelchair helps her back pain, lower limb pain and her BIID-related distress.
Chloe has spent a lot of time researching paraplegia from an early age and now has many friends with paraplegia and also many with other disabilities. Though obviously she cannot 100% understand how it feels to be paraplegic, she is not naively fantasising about it. She knows what she is getting into.

Please see the documentary for what it is - sensationalism. Chloe is doing her best to raise awareness of BIID and it is a very difficult job. She has had to accept that television programmes will bias towards the sensation and the scandal and the message will come out skewed, but nevertheless wants to bring BIID into the open.

I stumbled across transabled.org many years ago, and after being at first taken aback, disturbed, etc., I continued to read and I have come to accept BIID for what it is, a neuropsychological condition. I now consider Chloe a friend.
I don't want to sound to preachy about it, just pre-empt some of the comments that may appear. I don't mind discussing this - in fact I am more than happy to - but I have read an awful lot of abuse online aimed at Chloe and I don't want to see that here.

Sunshine Meadows

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Re: Secret Lives - Paralysis
« Reply #3 on: 19 May 2012 12:04AM »
Gravity,

Thank you for posting, I am finding it hard to ' get my head' around this because in terms of body identity the only examples I had heard about were transexuals and people who wanted limbs amputated.

http://transabled.org/thoughts/other-thoughts/chloes-thoughts/apotheosis-of-the-emotional-base-jump.htm

http://transabled.org/thoughts/other-thoughts/chloes-thoughts/national-geographic-feedback.htm

devine63

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Re: Secret Lives - Paralysis
« Reply #4 on: 19 May 2012 01:08AM »
VS Ramachandran's books have made some reference to BIID type symptoms - I think his examples of people with phantom limbs might also be related examples.   see http://cbc.ucsd.edu/ramabio.html   

regards, Deb

Jockice

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Re: Secret Lives - Paralysis
« Reply #5 on: 19 May 2012 09:25AM »
There was a programme on BBC2 in the 90s called The Wannabes, about people who really wanted a leg amputated. As far as I'm aware the main person featured (who they showed mainly in silllhoutte) actually did eventually get a surgeon to amputate a healthy leg.

Yip, it seems strange to me but no doubt some of my likes etc would seem strange to other people. We're all different. As long as someone doesn't do harm to me personally or to the population in general I'm more or less fine with it.

I know perfectly normal-looking women who diet and/or exercise to excess. Are you trying to tell me they like their bodies. And what about tattoos? I just don't get them at all, but lots of people are getting them nowadays. It's a weird world all round.

ChrisPage

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Re: Secret Lives - Paralysis
« Reply #6 on: 19 May 2012 10:30AM »
There's a whole world of difference between tattoos and this. If they want to be us, they can also have the discrimination we face.

Gravity

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Re: Secret Lives - Paralysis
« Reply #7 on: 19 May 2012 10:56AM »
And they get it, Chris. It and more.

Sofie

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Re: Secret Lives - Paralysis
« Reply #8 on: 19 May 2012 12:06PM »
For some reason, (I have never heard of BIID until now) I thought this was something to do with Münchhausen Syndrome.

I have heard of people wanting limbs amputated. However, the case I'm thinking of, I think he actually had something wrong with the limb. I think it was pain related.

Jockice

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Re: Secret Lives - Paralysis
« Reply #9 on: 19 May 2012 04:24PM »
"There's a whole world of difference between tattoos and this. If they want to be us, they can also have the discrimination we face."


I wasn't saying they were the same thing, I was talking in general about people wanting to somehow change their body. I've never (knowingly) met anyone with BIID but I can't imagine life's easy for them either.

hossylass

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Re: Secret Lives - Paralysis
« Reply #10 on: 19 May 2012 05:32PM »
To be honest if you have very  bad fibro I can understand the desire to not move and not feel - thats not the same as the concious desire to not be able to move, just a desire that people stop expecting you to.

I do wonder if this may be the starting point.

Please excuse me if no-one else feels this way - I've had a rough week thinking others were expecting of me, and projecting the imagined expectations onto myself, and then desperately wanting them to accept that just because they dont see the disability, and because it fluctuates... blah, blah.

Sofie

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Re: Secret Lives - Paralysis
« Reply #11 on: 19 May 2012 05:40PM »
I think I understand where you're coming from, Hossy. As I understand it, Fibro is a pain condition?

ditchdwellers

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Re: Secret Lives - Paralysis
« Reply #12 on: 19 May 2012 06:15PM »
Sorry you're feeling so shite at the moment Hossy.  I've been pretty rough the last few weeks too.  Do you think it's anything to do with the weather?

Mabelcat

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Re: Secret Lives - Paralysis
« Reply #13 on: 19 May 2012 06:44PM »
Hossy - I can buy that idea.  A bit of not feeling would be good.  I am really having to force myself to do anything at the moment and wish I had some visible and provable get out clause.

Gravity

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Re: Secret Lives - Paralysis
« Reply #14 on: 19 May 2012 07:09PM »
It seems everyone is struggling at the moment. Hopefully we will all improve soon. >bighugs<

I've definitely had the thoughts that I would sacrifice movement in my legs to no longer be able to feel the PAIN in them, but they're idle.
Chloe has had BIID from childhood, and developed fibromyalgia in her 30s. (She is now in her 50s.) She - quite paradoxically - really loathes using anything that displays her fibromyalgia. She took a very long time to be persuaded to use a sling and wrist braces when she needed them, but has been bandaging her legs and fantasising about wheelchairs since childhood.
It's pretty damn confusing to an outsider, but Chloe's internal bodymap, her identity, is of a paraplegic wheelchair user. Wheelchair, leg braces, etc. make her feel like herself, whilst the idea of having to use wrist braces is wrong. Because she's not *meant* to have fibromyalgia (like I'm not meant to, like others aren't meant to).

*Brain fog* That's not perfect, but hopefully you get the idea...