BIID/Wannabe Dilema

[brendanuk]

OK so I've just been reading Claire's dilema in the Devs Only section about being invited to train at a rehab centre with quads etc. It made me feel uneasy. I know when I was in rehab I would have reacted badly if I found out that someone was using a chair not because they had to but because the can do. Now I don't know too much about BIID but I wouldn't consider it a legitimate reason to use a chair. Can you imagine if it happened in the paralympics? If you want to do it then at least be upfront about why you are using a chair first.

Sorry this is in an open thread but I don't see why I should hide my thoughts in a PM.

[Claire]

Sept 17, 2008 5:27:18 GMT -5 @brendanuk said:

Sorry this is in an open thread but I don't see why I should hide my thoughts in a PM.

While I certainly wouldn't have asked the question if I wasn't prepared for negative responses, I didn't want to see it show up here. This topic is pretty inflammatory, and besides, I thought "Devs Only" was off limits -- the idea being that it's supposed to be a safe place for us to express ourselves without fear of wheelers objecting.

Sept 17, 2008 5:27:18 GMT -5 @brendanuk said:

I know when I was in rehab I would have reacted badly if I found out that someone was using a chair not because they had to but because the can do.

Yeah, that is basically the crux of my unease. They know I can walk; I told them when they asked me what my disability was. I have a rare neurological problem that makes walking long distances difficult. That's true, actually, that's what BIID is, although the difficulty is emotional, not physical. Also these guys are not newly injured, any of them. If it were otherwise, I would never consider it.

Sept 17, 2008 5:27:18 GMT -5 @brendanuk said:

Now I don't know too much about BIID but I wouldn't consider it a legitimate reason to use a chair.

Is there an emoticon for "dismay"? Do you even realize what you just said, Brendan? How can you make a judgment on something you know little to nothing about?

Sept 17, 2008 5:27:18 GMT -5 @brendanuk said:

Can you imagine if it happened in the paralympics?

I don't think it can happen. I have a friend who plays basketball in a "home" league that has come paralympian players on it. The "home" league invites AB players because without them to fill up the ranks, there are not enough wheelers to make up a team at all. In order to move from the "home" league to the national team, they need a doctor's statement outlining the player's level of ability, in order to properly classify the player.

Sept 17, 2008 5:27:18 GMT -5 @brendanuk said:

If you want to do it then at least be upfront about why you are using a chair first.

I wish I could. I want to, and it tears me up inside! But you're the perfect example of why I can't. You admittedly don't know anything about BIID, but you've already decided that I have no right to wheel *at all*, let alone work out with these guys. How can I be upfront about it, knowing that a great many of you feel that way?

My goal in life is to change that, so that people with BIID don't have to hide, but I doubt I'll see it happen in my lifetime.

I would love to have the chance to tell you just what BIID is, so that you could form an educated opinion. Then if you still decided that I have no right to use a chair, at least it could be an informed judgment, and maybe we could agree to disagree and find some kind of happy medium where we can coexist peacefully. If we discussed it here, would you at least hear me out with an open mind?

[brendanuk]

I thought the Devs Only section was only off limits to contribute in, not to read? If this is now the case is there a way to make it to only Devs can read it etc?

Thanks, I'm learning something new all the time. What do you consider 'long distances'? Over here people who can't walk long distances use scooters/buggy's to cope. I've read your stuff before about you going on trips away so you can use your chair where people don't know you so you won't be judged etc I might understand it if its for 'long distances' but not transfering into a car etc. No offence was meant. Just expressing my thoughts at the time. I'm glad its brought stuff out in the open and made it easier to understand for people who 'judge' like me.

I'm not into hating people because they are different so dont take it that way.

[faith]

I am well aware that the wheelers read the Devs only section- and I have no problem with that.

[brendanuk]

I thought it was a known thing wheelers read it. Only that we're not allowed to write in it. Which I fully respect.

[Ouch]

Brendan, I'm not sure you're understanding the point Claire's making; Charlaine - you do seem to understand.

Just as you and I use a chair for a physical disability, Claire needs it for a mental reason - not being a paraplegic is as difficult for her as being a paraplegic is for me, for example.

It is a hard concept to grasp in our positions, but it is entirely real, she and others who suffer from 'BIID' did not wish it upon themselves, and can't turn the switch on and off, and just be able to deal with their body image, much like we can't turn on and off the switch to just get up and walk.

[Claire]

Sept 17, 2008 9:05:27 GMT -5 @brendanuk said:

I thought the Devs Only section was only off limits to contribute in, not to read? If this is now the case is there a way to make it to only Devs can read it etc?

You guys are allowed to read, and I'm also well aware that you do. But what you basically did is copy/paste what I said there, to here. Tony made a joke about doing that in Tri's "What part of dev's only eludes your comprehension" post. But he assured us he was only kidding.

I'm not angry, just feeling somewhat violated.

[matisse]

I figure as long as she doesn't take my parking spot, it's all good.

[brendanuk]

I am starting to understand it more. Claire said she cant walk 'long distances'. I am wondering what she considers a 'long distnce'.

Claire you obviously wanted a responces from wheelers as you asked if they wanted to they could PM you. If its discussed here everyone can throw their thoughts into it. A healthy discussion to bring people to life. Its been too quiet.

[Claire]

Sept 17, 2008 11:32:01 GMT -5 @brendanuk said:

Claire you obviously wanted a responces from wheelers as you asked if they wanted to they could PM you. If its discussed here everyone can throw their thoughts into it. A healthy discussion to bring people to life. Its been too quiet.

Okay, I'l buy that.

Sept 17, 2008 11:32:01 GMT -5 @brendanuk said:

I am starting to understand it more. Claire said she cant walk 'long distances'. I am wondering what she considers a 'long distnce'.

Hmm..."can't" is a relative term. It could mean sheer physical impossibility, or an inability to do something withough a lot of physical pain, or an inability to do something without a lot of psychological distress. A long distance for me would be something like a shopping mall, the university, Ikea or WalMart, amusement park, or simply going for a walk for exercise.

Note that "long distance" can be cumulative as well. Several short errands combined in a short space of time equals one long distance.

And it's not always the same. Good days and bad days, you know?

Sept 17, 2008 9:05:27 GMT -5 @brendanuk said:

Thanks, I'm learning something new all the time. What do you consider 'long distances'?

Over here people who can't walk long distances use scooters/buggy's to cope.

All of them? Scooters/buggys: 1) are very expensive; 2) require special modifications to a vehicle to transport the thing; 3) #1 and #2 are often subsidized by gov't or insurance (which I'm not, nor do I seek to be, and yes, I know that just as often it's *not* covered); 4) larger and bulkier and are thus harder to fit into smaller spaces (like store aisles); 5) don't give you any opportunity to get exercise and use the parts of your body that you can use. I actually think that a manual chair makes much more sense if you've got your arms and no fatigue or pain issues involving your upper body, and I further think that the reason more people don't use them is because in their minds, a manual chair looks more crip, and that often the choice to use a scooter is all about a negative perception of disability and not because the scooter is actually the more logical choice. Anyway, if anyone asked me, which they haven't ever, that's what I'd say.

I have a neighbor who can barely walk. Her daughter got her a chair so that they could go out. She refuses to use the chair, and instead simply never leaves the house. She prefers that to the shame of being seen in a wheelchair. For me, using a chair is about having the freedom to go out into the world and do what I need and want to do - and enjoy doing it - without most of the accompanying emotional/psychological issues that always go with walking. I know it's fucked up. But that's how it is.

I've read your stuff before about you going on trips away so you can use your chair where people don't know you so you won't be judged etc

Yeah, although I don't do that anymore. Some still do because they've never managed to find a way to bring it into their lives at home.

I might understand it if its for 'long distances' but not transfering into a car etc.

Well, with regards to transferring, I don't personally pretend to be a para (although I did, in the beginning) because ultimately I find it to be ludicrous. What if someone sees you walking? What if you bang your shin on a coffee table and you yelp "Ouch!"? What if your chair starts to flip forward and you can't control that impulse to put your foot down to catch your fall? Your legs aren't atropied, anyway! Others in my situation don't agree with me, saying that only when they actually live as a para do they feel any peace. Hard for me to judge, but it's personally not for me. I *do* feel better, but it's not worth the stress associated with so much hiding. I try to keep it as close to the truth as I possibly can, without having to reveal the private emotional/psychological stuff that I feel is nobody's business but my own, and which I will not reveal unless I am 100% sure of their discretion.

No offence was meant. Just expressing my thoughts at the time. I'm glad its brought stuff out in the open and made it easier to understand for people who 'judge' like me.

I also don't mind bringing stuff out in the open, and I always welcome the opportunity to discuss it. I have to admit that while I do think talking about is good, I have a tendency towards knee-jerk reactions when I feel like people are not listening or making snap judgements. Sorry if I took offence where none was meant.

Sept 17, 2008 9:05:27 GMT -5 @brendanuk said:

I'm not into hating people because they are different so dont take it that way.

Okay, won't take it that way.

[dolly]

yes, i think triassic's question "What part of dev's only eludes your comprehension?" may end up becoming a catch phrase here!



i think it's safe to assume that if we post something in "devs only" we are obviously not looking to have a discussion about it on the general board. if we were, we would have made our post there.

i don't think it's right to call someone out (however innocent the motivation may be) on the general board with something they have chosen to discuss with devs only . that tiny little corner of the board is just for us. hence, the title. it's our place to share with each other without having to explain ourselves or be judged or questioned by the others on the board. devs supporting devs... that's what this place was intended for, after all.

brendan, even if you waited a few days and made a generic post to open discussion about the same topic, i would have been ok with that. but to quote claire, single her out and invite others to comment on something she specifically chose to discuss with the "devs only", i think is wrong. i don't blame her for feeling violated.

i have been for the most part pleasantly surprised by the way the wheelers have respected the 'devs only' section on the whole. so a big thank you for that. because as much as i enjoy the interactions with everyone on the general board (and i do! ), having the opportunity to share and explore those very personal experiences, situations and feelings with others who understand and have "been there" is still the primary reason that i come here.